Oh- some days are just tough. Some weeks are just tough. Tuesday night I was diagnosed with a staph infection. Which is fine--it really is. It hurts and itches like hell, but it's fine. What's not fine is that I cannot let Joey (or Tommy) catch it. UGH!
Then I sat down tonight to fill out some paperwork to try and get in to see a very highly thought of doctor to help us with Joey's overall care. I should have known when the cover letter said that the forms they sent to be filled out would take at least two hours to fill out that it was too much for tonight, but, no. I thought I could at least get a couple of pages filled out. Get a bit of a head start (Is there such a thing anymore? Will I ever actually get "a head" of anything?)
Oh, when I make plans, God really does laugh. I got through 1 page of about 20 total. The first crack came with the following (the form asks you to fill in the blanks):
What do you like about your child?_____________________________________________
Easy, but it hit a bit of a nerve because I wasn't sure where this was going. Here was my response:
What do you like about your child? Everything--especially his smile and his kisses.
This is where I had caved and gave in to what's been a bit of a stressful week:
What is your dream for your child?______________________________________________
It's funny. No one has ever really asked me that about either of my kids. I try to focus on the here and now and to enjoy every day because the days go so fast and they change and grow so fast, but this really forced me to think about it and put it into words and for a few moments (okay- for the rest of tonight and possible the rest of the week) it hurt because what I want for Joey right now is so basic and yet so tough. But we are working every day and I know it will all pay off. Some days are just a little harder than others.
What is your dream for your child? For him to speak, to walk, to be happy. To someday be able to live independently and do whatever it is he loves.
Something for all of us to think about. What is your dream for your child?
Last week I posted about the gorgeous model in the Nordstrom catalog as well as the beautiful girl with the freckles. Here is the rest of the story...
Below is the blog entry by Dr. Brian Skotko, who is an incredible doctor in the world of Down syndrome-- seriously, some of the moms want to start a fan club. When you read what he posted at http://childrenshospitalblog.org/mock-my-pants-not-my-sister/I think you'll see why he is such an incredible man, brother, doctor, advocate and educator.
By the way-- this is how Joey feels about the joker over at GQ who wrote that "Boston suffers from a kind of Style Down Syndrome, where a little extra ends up ruining everything." (I re-fuse to type the joker's name).
Mock my pants, not my sister
by CHILDRENS HOSPITAL BOSTON STAFF on JULY 18, 2011
The following was written by Brian Skotko, MD, MPP, a Physician at Children’s Hospital Boston’s Down Syndrome Program. It’s in response to a feature in GQ magazine that used insensitive language.
Brian Skotko and his sister, Kristin
On July 15, John B. Thompson of GQmagazine slammed Bostonians as the worst dressed in the nation. Evidently, our beloved Beantown is actually a “bad-taste storm sewer” where all the worst fashion ideas come to “stagnate and putrefy.” He further decries, “Boston suffers from a kind of Style Down Syndrome , where a little extra ends up ruining everything.”
Go ahead, GQ, and mock my blue whale-emblemed Nantucket-red pants. Laugh if you want at the loud argyles that I prefer to wear with my black suit. I don’t even care if you dismiss the sexy pink polka-dotted tie that I like to wear with my blue-checkered shirt in clinic. But, whatever you do, do not mess with my sister.
My sister, Kristin, has Down syndrome, and let me explain what “Style Down Syndrome” really is. “Style Down Syndrome” is smiling when everyone else prefers to frown. It’s spending three summers, in sheer determination, learning to ride a bike because you want the freedom to be like everyone else. It’s singing tunes from Grease at the top of your lungs with your friends. It’s celebrating a third-place victory at a swim meet with as much gusto as the gold medalist.
Style Down Syndrome is strong-willed, persevering, and forgiving—because it has to be.
People with Down syndrome are ridiculed on a daily basis. Although not as obvious as GQ’s sport, children with Down syndrome do not always get invited to birthday parties just because they have Down syndrome. Young adults, freshly minted from high school, sometimes have trouble finding post-secondary opportunities. And, adults with Down syndrome are often the first to be fired when the economy tanks.
All of this comes at a time when people with Down syndrome are achieving previously unimagined successes. They are graduating, working, living and loving within our communities. So, why do people underestimate their abilities? It must be because they do not know someone with Down syndrome. Because, if they did, they would come to appreciate the life lessons that accompany their extra chromosome.
If my friends who are black were mocked, they would not take it. If my friends who are gay were slurred, they would not take it. My 400,000 fellow Americans with Down syndrome have been cheapened, and I will not take it. I invite GQ magazine to introduce its readers to real people with Down syndrome through the My Great Story campaign of the National Down Syndrome Society.
For more information on Dr. Skotko and Children’s Down Syndrome program please visit their Facebook page, where you’ll find a great invite to share your own child’s “Down syndrome style.” We’ve got tons of amazing pictures on there already, please join the fun! To learn more about the many social media platforms Dr. Skotko’s post has resonated with, please click here.
IMPORTANT: New Healthcare Guidelines for Children With Down Syndrome
Before I sign off for the night-- I have to post a link to the new American Academy of Pediatrics Clinical Report-- Health Supervision for Children With Down Syndrome-
I wasn't going to even post anything today because I'm working on a future silly post, but then I heard about the Nordstrom Anniversary Catalog and I fell in love with that heavenly store all over again. As if I actually need a good reason to go there and shop. At least now I do have a great reason! Check out page 73 of their Anniversary Sale Catalog-- the young, handsome man to the left:
Click here to see this fabulous Nordstrom Catalog.
What a wonderful, wonderful model. I just love it. A young man who happens to have Down syndrome, featured in a major retailers catalog wearing a super cool outfit and looking incredibly hip. Stereotypes-- BE GONE!!!!
There are other awesome retailers like Toy 'R Us, Target and Pampers who also feature children who have Down syndrome in their ads-- check out the little girl on the bottom left.
See-- I have some theories on some of the reasons why people are so afraid of Down syndrome. Of why the termination rate of prenatally diagnosed children with Down syndrome hovers between 90-94% (brutal statistic-- right?). My theory is that as humans, we all fear difference. We fear standing out. We fear not being like others, so therefore risking being disliked.
Quick science lesson (language straight from the NDSS.org website):
In every cell in the human body there is a nucleus, where genetic material is stored in genes. Genes carry the codes responsible for all of our inherited traits and are grouped along rod-like structures called chromosomes. Normally, the nucleus of each cell contains 23 pairs of chromosomes, half of which are inherited from each parent.
Down syndrome is usually caused by an error in cell division called "nondisjunction." Nondisjunction results in an embryo with three copies of chromosome 21 instead of the usual two. Prior to or at conception, a pair of 21st chromosomes in either the sperm or the egg fails to separate. As the embryo develops, the extra chromosome is replicated in every cell of the body. This type of Down syndrome, which accounts for 95% of cases, is called Trisomy 21.
One of the things that completely amazes me about this extra 21st chromosome is that there are common physical traits among individuals who have Down syndrome. As explained on the ndss.org website, a few of those common traits are low muscle tone, small stature, an upward slant to the eyes, and a single deep crease across the center of the palm. Now mind you-- every person with Down syndrome is a unique individual and may possess these characteristics to different degrees or not at all. But isn't it quite incredible? That despite race and gender, there may be common physical traits among individuals who are not even related. It's almost incomprehensible-- I find it amazing.
To see other kids who, like Joey, happen to have Down syndrome, featured in every day ads with other children who do not have Down syndrome, well, it just gives me hope. It fills my heart with wonder and possibilities.
Educating, exposing, building awareness. All things that as a mom and an advocate I strive to do. It's the little steps that will hopefully make the world a better place for both of our sons whether or not they share physical traits with each other or anyone else.
There is one more link I have to share because I think she is so beautiful and I think these photos help to keep breaking all stereotypes.
The Girl With The Freckles-- oh how beautiful she is. Click here to meet her.
Oh, and p.s., The Girl With The Freckles also happens to have Down syndrome. I just love her freckles!
Before I sign off I also must give a huge shout out to all the amazing people who have donated to Joey's Buddy Walk team so far and who have purchased t-shirts!!! We put in our first order on Monday and we'd sold 80 t-shirts. As of today, we are up to 20 t-shirts on this next order. Also-- we have now sold t-shirts to folks in Ohio, Nebraska, DC, New Jersey, Connecticut, Georgia and North Carolina!!!
If you are interested in donating to his team for the Buddy Walk (or joining us!) click here.
If you would like to order a T-shirt-- leave a message in the comments or email me.
Now get out there and do some major shopping at Nordy's!!!
There is so much going on this month that my head spins. We kicked off the fundraising for the 2011 Buddy Walk and for Joey's All Stars this week and that has been incredible. Between t-shirt orders (80 so far!!! Multiple orders from Nebraska and from Dayton!) and team sign ups I am trying to stay on top of everything. My efforts to go part-time at work haven't materialized thus far, so that also impedes any free time at night to write, take pictures and get organized. But we try our best and before I could blink, it is almost the end of July. We've got the Buddy Walk on August 20th (click here to donate and or join our team!) and I am also trying to get together Joey's 1st Birthday Party on August 27th and then Thomas Henry turning 3 on September 14th.
In between those big events we have the usual appointments as well as the down time that we try to enjoy and find a moment to just breath and enjoy these beautiful boys. Time must be marching on because Thomas Henry's favorite song has gone from "Colder Weather" to a more summery Zac Brown song called "Knee Deep". For the first few weeks I was not allowed to sing along with it in the car (this is hard to do when you hear it about 50 times a week-- and not to mention it's a pretty catchy tune- well it used to be). He would tell me, "Mom. Don't sing. That man needs to sing." I had flashbacks to my own childhood where my mom would have Linda Ronstadt or The Eagles on the 8 track and I would beg her not to sing in the car. If memory serves me correctly I think she might have wished a child just like me on me. Well, Mom. I think your wish may have come true! After weeks of denying my car singing (the best-- I think better than shower singing because you have the music to help) he started telling me to sing. Hard to sing on cue like that when you are as tone deaf as I am. I literally have to feel the music, but so I sing. Totally off key, but with a lot of gusto. If you see me at a stop light and I look like I'm talking to myself I am actually singing "Knee Deep".
The balancing act (as all mother's know) continues on a daily basis and ultimately I just do my best. I try to balance Joey's appointments and therapy sessions with down time and "neutral" time that really just involves hanging out and being with him as a little one and not as a patient. I continue on the front of also having one on one time with Tommy and giving him attention. The thing is-- they are both such fun kids that if I could, all I would do is spend time with them. Tommy continues to blossom and crack us up with his expanding vocabulary. Apparently if Tommy ever cries or is too wild I say , "Slow down" because that is now his response to everything. Joey crying? Tommy pipes in, "Slow down, slow down, slow down." Tommy in trouble? Getting sent to time out? That also calls for him to tell me to "Slow down, slow down, slow down." It cracks me up. The negotiator in him is coming to light and keeping a straight face gets more and more difficult.
This past week has brought new things to light and I maintain that God shows you what you need to hear/know. It usually just depends on whether or not you are up for listening/accepting it. This past week, I learned of two different people who have Down syndrome who passed away due to heart issues. Their deaths were not recent, but it was the heart connection that got to me. One was an eight month old baby and the other was a twenty-five year old. I learned of these deaths from two different people and they are totally unrelated, but it was a good reminder of the complications that are sometimes a very real reality of also having Down syndrome. Both times I learned of these deaths it hurt my heart in a deep, deep way as I grieved for both the loss of these lives as well as for the parents and families. But, it was a good wake up call. Joey's only 6 weeks post-op. It was a serious operation. He is still healing. I cannot forget what he has been through and how fortunate we are that he is doing well and that he is with us.
I also learned of two new people who I didn't know followed the blog. When someone tells me that they read the blog and enjoy it-- well, I just can't really explain what that means to me. It's incredible. To know that the effort, the time and information is getting out there is just incredible. It reinforces that passion and fuels my inner fire for educating and advocating. Thank you for reading. Thank you for supporting. Thank you for learning.
One last thing that completely floored me and made my week was when a friend told me that this blog has helped take away some of the mystery and some of the fear of having a baby with Down syndrome. I also can't explain what this means to me. It's truly the one major goal of writing this blog. To take away the fear. To shed light on darkness. Again-- I thank you all for the feedback and the support!
Some of Tommy's latest adventures include chasing squirrels in the yard and introducing himself, "Hi Squirrel-- I Tommy." He watches Curious George hang out with squirrels and why shouldn't he? The other morning we heard something in my home office and we went in to witness the following encounter between Tommy and one of two baby hawks that live in the tree outside my office-
While Tommy is busy bird whispering, Joey has been our resident Houdini. I was literally two feet away in our master bathroom. Tommy, Joey and Hershey were all watching Curious George while I got ready. I meant to snap Joey into his little seat, but I didn't think twice about it until I came out of the bathroom and almost stepped on him.
Not a peep was made by any of these three during this big escape. Hershey lying there quietly watching. Tommy was still engrossed in Curious George and I was dumbfounded. First, I was worried that Joey might have hurt his incision. Then, I was worried that he might have hurt his head. Finally, I was just thrilled that he had the gumption and get up to somehow get himself out of his chair!!! He might not be sitting up yet, rocking on all fours, standing or even nearly walking, but he can get out of his seat, by golly! Go Joe!
I'm pretty sure if you looked up "trouble" in the dictionary, this photo might be there.
This week I have also been on my psycho-crazy efforts to work on helping Joey learn how to sit up on his own. I scour the internet, read my therapy books and search for ideas. I saw this one online on Babycenter and so immediately (I have a priority issue-- just about ever single thing I do is "immediate"--this causes for late nights and crazy days) I had to get to Wal-Mart to get the right basket and balls. Well, the first Wal-Mart didn't have the balls, so I traveled to a Super Wal-Mart, which I know some people hate Wal-Mart, but if you do go to Wal-Mart, super Wal-Mart in Wadsworth is the one to go to. There I bought not just 100 fun balls, but 200 fun balls. All I could think about was how awesome these would be in getting Joey to sit up! What I failed to do was to take in the Thomas Henry X factor. Almost 3-year-old boy plus 200 fun balls equals INSANITY!
Not sure what Joey's look is. Fear? Excitement? Shock?
Here I think he is wondering where we could have possibly gotten all of these balls....
Here you go, bro!
Hair color? Still a mystery. Blonde, strawberry blonde, red? Not sure-- just too cute.
Two beautiful ladies in one weekend? Fortunately my husband was not around for all this gorgeousness. :-)
Joey, however, thoroughly enjoyed it and I had a wonderful time catching up with Andrea.
In less than a year, one little boy with one extra chromosome has changed everything. He's taken us on unexpected journeys. The highs of this roller coaster have been epic, while the lows have been bumpy and heart-wrenching. We've learned to take nothing for granted, especially good health. We've learned much deeper empathy and compassion for everyone we meet. We've learned that everyone has some story behind their "public" face. We've learned that inspiration comes in all shapes and sizes. We've been humbled to learn that Joey's village is both mighty and kind.
Over and over, friends and family will ask, "What can I do?" We're still learning the answer to that very question, but the 2011 Buddy Walk is going to be a great place to start.
A couple of months ago I attended my first Buddy Walk Committee meeting. It was the month before Joey's surgery and I had what felt like a million things on my plate, but I really wanted to be involved and to do anything I can to get to know other parents, to get information on resources and to help in any way possible. In the past couple of months I've met some wonderful, passionate and dedicated parents. Parents who are committed to advocating and raising much needed funds to improve the lives of people who have Down syndrome. Parents whose children share a common bond with Joey-- Down syndrome. I've learned about little ones named Tori, Genevieve, Brennan, Casey and Conner. The committee meetings are busy with real work, but it's the talking before and after the meetings with the other parents that has been so meaningful. As with anything we volunteer for in life-- you always get tenfold more than what you give. No matter how long a day I have at work and home, when I leave a Buddy Walk Committee meeting there is a spring in my step and a renewed sense of purpose and focus to this mission to improve Joey's future and opportunities.
On August 20th, 2011, we will be participating in our very first Buddy Walk. It's a walk that was established in 1995 by the National Down Syndrome Society. The goal of the Buddy Walk is to raise funds, and to bring education, acceptance and awareness of Down syndrome. The Buddy Walk vision is to create and environment in which individuals with Down syndrome are welcomed with fairness, enthusiasm and encouragement. Sounds wonderful, doesn't it? Sounds like what each of us would like for both ourselves and our children--fairness, enthusiasm, encouragement. Powerful words.
The day of the walk, registration is from 9-10am and the walk kicks off at 10am. This year, Akron's own Todd Eisinger, a self-advocate, entrepreneur and Special Olympian will be serving as the Honorary Chair of the event. There will be activities and food for kids of all ages both before and after the walk on the plaza. I hear the Dunkin Donuts booth for coffee and donuts is a hot spot pre-walk!
1. Join Joey's All Stars Team for the 2011 Buddy Walk on Saturday, August 20th at 9:00 am at Progressive Field and help raise money.
2. Save your dimes!!! All Buddy Walk Teams are collecting "Dimes for Downs". Save your dimes, roll them and drop them off or call me and I will pick them up and roll them. This is especially great for kids to help with! Everyone who is participating in the walk is asked to bring a roll of dimes the day of the walk. Can you imagine if the 4,000 walkers each bring a roll of dimes? The team who turns in the most dimes will receive special recognition (but most importantly-- it's more money for Down syndrome research!).
3. Buy and wear with pride a Joey's All Stars Team shirt for a $10 donation. Shirts are available in Youth S, M, L or Adult S, M, L, XL, 2XL. Email me if you would like to order a shirt. ** A special thank you to Scott Allen for making our vision happen and for making them dirt cheap!
4. Advocate and educate others on what Down syndrome is and what it means to have it or love someone who has it. Share this blog, share your experiences, take time to scatter sunshine.
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