Day 31 -- Why "Awareness"?

Today is the last day of Down Syndrome Awareness Month and thus, the last day of 31 for T21. I will miss blogging every single day, as it has gotten me into the habit and it has made me think. I have thought more about people with Down syndrome, their parents, their abilities and their acceptance in our world. That is why there is an awareness month, I suppose, so we will ponder these things and so that we will promote acceptance.

I believe there is a dire need to promote acceptance. These days the number of decisions to terminate certain pregnancies which are thought to be carrying a baby with Down syndrome has greatly increased. This trend is disturbing and so heart breaking. Is it a commentary on lack of acceptance in our society? Or is it reflective of a culture that is fearful of anyone less than “perfect”? (How do we know what is perfect anyway? Ourselves?)

We, as a society, do not need that mark upon us-- the mark of only bestowing value upon those whom we deem valuable. We are far too short- sighted to determine who is “worth” life.

Many parents think that they just don’t have what it takes to raise a child with a disability. To them, I would say, “Yes, you do. You are given exactly what you need when you need it. Enlarge your parameters and erase your preconceived notions. Dare to seize your gift. In return you will receive more than you ever could have dreamed. Your life is about to be changed and for the better!”

Day 30 -- The Best Gift

There is no shortage of individuals with Down syndrome who inspire. The young lady in this story is evidently a fantastic dancer. I am going to see if I can find video of her dancing-- it would be so great to see her in action. One of the most memorable things about this article is how her dad's pride comes through. He has a lovely quote, "Thalia is the best gift that God has given us."

While there are many kids with and without Down syndrome who will never make the news, their strengths shine and motivate us daily to be better people. Those strengths may be an indomitable attitude, a determined spirit, or simply a beautiful smile. I know that my kids are definitely up there with the best gifts that God has given me.

Day 29 -- Let's Hear it For the Girl (Athlete)

Lately there have been a few guys with Down syndrome or other special needs who have made it to the news with their athletic endeavors. Here is a good article about a girl who plays soccer and who also has Down syndrome. Sounds like she is a real asset to her team in many ways. Great to see a girl getting some news coverage, too!

Check out this young lady's story here.

Day 28 -- Sleep Study

When N was in the fourth grade, it was recommended that he get a sleep study. He went through the whole thing of having electrodes glued to his head and trying to get to sleep in a strange place. Tough night for him and Dad (thank you, sugar), but they got through it. I remember I was out of town when I got the results via a call on my cell phone. The nurse sounded alarmed at the lack of oxygen he received during several episodes of . . . . non-breathing. (I forgot the medical word for that.) She also told me the number of times he stopped breathing which was very scary. It appeared that there was an immediate need for a CPAP machine and an ENT referral.

He got his tonsillectomy for Christmas that year (arrrghhh) and I thought that would be the end of that. But lately my poor guy seems less than energetic. We have had another sleep study in the works for months now – reams of paperwork turned in, etc. I finally called yesterday to discover that they cannot find the paperwork that took way too long to fill out. The kind nurse offered to ask me the vital questions over the phone. (I could hear her flipping pages to find what to do in case of dealing with mom with quivery voice.) Yay Frances! I love her.

But the best part of this story is that while she was filling out the paperwork, it came up that my son has Down syndrome. I could hear a smile in her voice as she said, “My little brother has Down syndrome. He is the best thing that ever happened to our family.” So cool.

Day 27 -- Special Exposure Wednesday

A Blast from our Past --
While looking for photos of a certain costume, I spent a long time going down memory lane. Oh, what fun! I want to hug that little man in his kid-from-Jerry-McGuire glasses. If you are wondering if they really do grow up fast, it's true, especially in retrospect!






Check out more fun photos at 5 Minutes for Special Needs.

Day 26 -- Teen Scene

Because my son has Down syndrome, does it mean he does not go through the same developmental phases as everyone else? No. He did not escape teething, the terrible two’s, or the anxiety of the first day of school. He now must go through adolescence and experience all that that has to offer.

I must say, he seems to have passed through much of it unscathed. He has the occasional attitude. When I press for info or am overly protective, I get the suppression of the eye roll and the sigh of exasperation. He does not, however, seem to suffer from the extreme self consciousness of many teens. Rather, he seems to enjoy some limelight and to be fairly self confident.

What does he enjoy? Playing basketball is a passion. He plays alone or shoots with whoever happens to be around at the fitness club that he walks to. He loves any sport (especially soccer, baseball, and ping pong) and enjoys winning at board games and card games. He likes tv, action movies (and any movie), and watching football. He has long enjoyed writing stories and now does it on his laptop. He is better at anything on Wii Sports than any of us and has lately grown very fond of Wii Fitness, coaching all of us on its finer points.

One of his favorite activities that he enjoys with his dad is playing Rock Band. The feeling is mutual; his dad can pretend fame right along with his son and they can learn songs together. Dad does guitar while N plays drums. They learn and master songs, go on to others, then get a new CD. Just today I heard N playing one of their favorites in his room -- “Long Time” by Boston. Loudly. It made me smile to think that this familiar rite of passage has not escaped him either.

Day 25 -- Just Some Facts

One of the leading sources of information about Down syndrome in the country is the National Down Syndrome Congress. They keep up to date info and have a beautiful brochure about Down syndrome, which you can request to be sent to you or anyone else. You can click here to see it. Be sure to check out that cutie on the last page! (Not mine, but SO cute.)

It does not go into the scientific explanation of Down syndrome, but it does relay some facts, which are:

Down syndrome is a common genetic variation which usually causes delay in physical, intellectual and language development.

The exact causes of the chromosomal rearrangement and primary prevention of Down syndrome are currently unknown.

Down syndrome is one of the leading clinical causes of cognitive delay in the world – it is not related to race, nationality, religion or socio-economic status.

The incidence of Down syndrome in the United States is estimated to be 1 in every 800 live births.

Of all children born in this country annually, approximately 5,000 will have Down syndrome.

There are approximately 1/4 million families in the United States affected by Down syndrome.

While the likelihood of giving birth to a child with Down syndrome increases with maternal age; nevertheless, 80% of babies with Down syndrome are born to women under 35 years of age, as women in that age group give birth to more babies overall.
There is wide variation in mental abilities, behavior and physical development in individuals with Down syndrome. Each individual has his/her own unique personality, capabilities and talents.

30% – 50% of the individuals with Down syndrome have heart defects and 8% – 12% have gastrointestinal tract abnormalities present at birth. Most of these defects are now correctable by surgery.

Individuals with Down syndrome benefit from loving homes, early intervention, inclusive education, appropriate medical care and positive public attitudes.

In adulthood, many persons with Down syndrome hold jobs, live independently and enjoy recreational opportunities in their communities.

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In that next to the last sentence, I would add that they not only benefit from those things listed, but that they thrive!

Day 24 -- Got Support?

After perusing a variety of blogs regarding raising a child with special needs, I see clearly what we all have in common. If we could have one thing for certain, what do you think it would be? An extra set of hands? Someone to do the laundry? Someone to take our child to therapy or to do other errands? Surely all of the above would rank pretty high, but what I see as a most definite need is to know that we are not alone.

One thing we all need if we are walking the journey of raising a child with special needs is support. I read blogs where people have never met, but are relying heavily on each other because they know that the other "gets" it. It is vitally important to have these people in your life, and these days, you need not be in the same city to have them!

If you find yourself wishing you had more in the way of support from family (or at least a little understanding), write them an email or letter. Often family want to be of help but are not mind readers and do not know how to help. Send them to an informative website and outline what would be helpful to you and what would not. Many times, they will be relieved to know.

Reach out. Let others in. Talk to those who have kids close to your child's age and find some people who understand. You are definitely not alone.

Day 23 -- You deserve a break today

This 23rd post for 31 for 21 is to recognize the moms of kids with special needs. I know what it is to devote your all to making sure your child has everything he needs. We moms are "on" at all times, making sure the therapies get done, the food is nutritious and the toys are educational. Because our kids are often assessed and we are told where they are on a developmental scale, we are looking for everything we can to enhance that development. I know I am constantly evaluating whether an experience can help or hinder development. Like even now, I wish my son's only TV watching consisted of PBS or the History Channel. (Did you know that one can actually lose brain cells while watching tv? Or that sleeping actually burns more calories than watching tv? I know. I hate tv.)

But, on occasion, we have to give ourselves the day off. We can be so vigilant about making it all count for our kids that it takes its toll on us. Let the play experience be what it is, resist the urge to teach every minute, and let your son watch "The Goonies", which is exactly what mine is doing right now.

Day 22 -- Now We're Cooking

I can’t tell you how much I wish I lived near this guy! I found this story by Kari over at a typical son, and she gave me permission to re-blog it. (Go visit Kari—I find her writing to be thought provoking. Her husband writes for the blog, too!) The guy in this story is not only handsome, but loves having his own restaurant. If he lived near me, we would probably be in there all the time. I hope his locals are!

Just reading what all he has done is so inspirational. My son N often talks about, “What if we had our own restaurant, what would we be cooking today?” (I usually tell him that that sounds SO exhausting and maybe he should just go find a job in an existing restaurant.) IHOP is his love, and since they always hang a banner that says “Now Hiring”, he considers it potential employment. (Come to think of it, he already can make a mean omelet!)

I hope you enjoy the story here and be sure to click on "About Tim".

Meanwhile, N is headed to a Costume Karaoke party tonight. He can dress like any rock star or singer. I have almost convinced him to be Jimmy Buffett. Hawaiian shirt and lei, plus sunglasses ought to get it. (Creativity with costumes does not seem to be hard-wired within me!) We parents are not invited, but I would LOVE to be a fly on the wall there.

Day 21 -- Myth Buster

In this challenge to blog for 31 days straight to recognize Down syndrome, I would like to address a myth about people with Down syndrome. I remember when my son was tiny and his tongue seemed way too long and too large and it poked out of his mouth. The more he got the feeding thing down, the more it seemed to retract. Hmm.

Many years later, we were speaking with his pediatric dentist, who was very good at what he did. He was commenting on the things in N’s mouth that were similar to and different from those of his other patients with Down syndrome. Then, he mentioned the size of the mouth. He said it is often a challenge to work on patients who have Down syndrome because their mouths tend to be so tiny. He also informed me that this is why the tongue often protrudes.

Well. Did you think, as I did, that it was because the tongue was too large for the mouth? Au contraire! The oral cavity is too small for the tongue. How about that? It is also common for patients with Down syndrome to have more ear infections. Likewise, this can often be because the Eustachian tube is so tiny that any fluid that gets in has nowhere to go. The ear canals are small, too.

There is our little lesson. Today, there seems to be so much therapy early on that feeding, OT, and speech work can teach the (normal size) tongue to retract. Considering that the tongue may also be affected by low muscle tone, that is an admirable feat—to learn to stay put in a very small space!

Day 20 -- Special Exposure Wednesday

Some fun with Dad at the driving range recently.

Did you know that Special Olympics offers a golf event that involves golfing with a partner? Here is an article about it. I wish N could do this one day!


For more great exposures, go to Special Exposure Wednesday.

Day 19 (of 31 for 21) -- About the Documentary

As I browse the blogs related to Down syndrome lately, I find that a recently aired documentary has caused some stir. I did not see it, although I received a text alerting me to it right before I walked out the door that night. I would like to see it though, despite what I have read.

What seems to have bothered some parents is that the future is not what they thought it would be for individuals with Down syndrome. It’s harder. And if they had come to a place of peace about the diagnosis, this film made them go back to wondering about the future. And about lots of things.

I remember early on when our son was just born and given the diagnosis of Down syndrome how my whole world seemed to be swirling. So many emotions, so much new information, so much uncertainty about the future. It swirled for months. I could not wait for life to settle down. Slowly, over time, settle it did. We developed our ability to cope with what we knew and pray about what we didn’t. Somehow, having a surprise like Down syndrome come into our lives taught me that I am not in control of what happens, nor of the future.

We developed our “new normal”. Our lives were different than we thought, but it finally became normal for us. This reminds me that at each stage we are thrilled and proud of what our child can do.

From the trailor it seems that the young adults in the documentary have lots of abilities and their parents are proud of them, while realizing there is still much room for growth. Each of our children is an individual with strengths that we applaud and appreciate now. That same child has weaknesses that are part of who they are and in which we encourage growth. They will have weaknesses in the future. We will also applaud them in the future. Support will be necessary. Looking ahead helps us prepare them for those challenges.

When we get there, that will be our new normal. It will seem no more scary than today. The past, made up of answered prayers, has taught me not to be afraid.

Day 18 -- Stay, Don't Stray

Ok, since yesterday's post was a little on the heavy side, I am going for something light today. You might notice a pattern with me-- when something is stressful or unpleasant, even, I retreat to beauty products, purses or chocolate. Today I choose . . . beauty products.

I would like, no, make that love, to recommend to you a product called "Stay, Don't Stray" by Benefit. You can find this at Sephora and I am not sure where else. I happen to be allergic to many things that go on the eye, but this one passes the test with me. You just put a little on the eyelid, and it makes a fabulous "base" for your eye shadow. Or, you can easily go without shadow, as it blends out all redness and remains a creamy ivory. The eyeshadow stays so well that you can actually use less than normal. And this is a good thing, since the product itself is $25, but I am telling you, it is worth it! (It pumps out a lot, way more than you can use at once-- this is my only complaint.)

Because I have tried more than a few products, I can say that this is my hobby. Or one of them. Sephora also makes the best nail file around, btw. How's that for "light"?

Day 17 -- Rosa's Law

Since Rosa's Law was signed into effect on October 5th, this blog regarding it is a little late, but noteworthy, nonetheless. Rosa's Law changes references in many federal statutes from "mentally retarded" to "intellectual disability". The effort was begun by the parents of a little girl who is 9 years old and who has Down syndrome. I found this link below, which lists all laws signed that day (this particular one is in bold letters), and down below are all these blog comments about it.

Wow. Call me naive, but I am stunned by some of them. Maybe this sort of thing just brings out the meanies. A few people think we should not waste federal money on such a language change, but I read somewhere else that there was no cost for this. (Sorry for the missing source, but I will keep looking.) Be warned: reading these comments can get you a little stirred up. They did me. I try hard to see where people come from, but there are some real jerks out there. However, one parent says that unless you have had the word “retarded” used as a slur against your child, you just won’t understand the need for this change. I agree here; unless the word has hurt you, perhaps there is no way to understand.

I do think that the change is needed because our society has gotten out of hand with its disrespect toward those who have disabilities, but will a change in terminology change the hearts of the seemingly heartless? I know that this new term connotes the same thing, but there is not the same derogatory and demeaning association with “intellectual disability”. I mean, movies and comedy routines have brazenly slammed with the negative slur of “retarded” for far too long. I do wonder what term might come down the pike after this one is outdated. We look at it as progress, but so did those who pushed for the change from “feeble minded” to “mentally retarded”. BUT. It all goes back to attitude and respect.

Read some good points and some jerky ones here.

Day 16 (of 31 for 21) -- Home again, home again, get to the blog

Today has been a full day of travel and I have mixed feelings about being home! The trip has been so much fun and such a welcome break from routine. I am not ready to slip back into routine right now, but I have gotten into the routine of blogging daily-- have ya noticed? (All for Down syndrome awareness this month.) It makes me want to change things up a bit around here just for the sake of it; no ruts that way, you know. Sometimes just rearranging a little furniture will accomplish that for me. What do you do when you need to break out of routine?

Day 15 -- These Boots Were Made for Walkin'

I am one tired woman, but the good kind of tired. I feel, in a way, like I have mastered this city of Madison by traipsing over it by foot. (Now Mom, if you are reading, just skip this one. Please know I am bringing you something good!) You see, Mom would not do this without a pistol in her purse. On second thought, Mom would not do this.

With Ted in a meeting all day, I went long and far from the hotel all by myself in search of fun and funky boutiques, and I was rewarded handsomely. After seeing all kinds of unique items and taking my time doing it (and purchasing a few), I headed for the campus part of town. I took in another impressive art museum and grabbed some lunch. I love the famous State Street because it is closed to traffic, giving the students and their bikes the run of it. I hit another contemporary art museum on the way back, as well as a few more shops. It felt strange but comfortable to be alone all day; it was a very enjoyable day.

Day 14 -- Traveling with Ted

Ted is interesting to watch in new places. He stays true to himself, he is not afraid to let his southern drawl flow unhindered, and he is friendly to all. I, on the other hand, watch how (and if) others are interacting and pretty much abide by "When in Rome, do as the Romans do." If others on mass transit do not make eye contact, neither do I. If others are not smiling at one another (as we often do in the south -- even at strangers), neither do I. But then, there is Ted. He holds doors for people, insists others go ahead of him (LOTS of others), and assists those who are having trouble. (For instance, he rearranged a whole counter so this lady could put her tray down in a museum cafe the other day!) I have noticed that he is not "doing as the Romans do". He is refreshingly kind, no matter where he is. I just blend in.

I am not saying that he is a perfect traveler. We do have our different preferences on how to get from one place to another. I may take on a little bit of the role previously thought to be held only by males. I willingly ask for directions, but once we are on our way, I want to get there as soon as possible. Ted will drink a half gallon of coffee, while I have thoughtfully denied myself any liquid for an hour prior to leaving. Ted then casually meanders into every quick stop in the direction of our destination. For instance, on our way to Wisconsin, he was in the "quick" stop for 15 minutes, while I sat filing my nails and whistling in the car. When I asked what on earth he was doing in there, he told me he had just been browsing the famous Wisconsin cheeses. Oh. I thought he was probably holding the door for a whole bus load of geriatric travelers. :)

Day 13 -- On the move to WI

After some big fun in Chicago, we are on our way now to Wisconsin. I have never been there before but am looking forward to checking out Madison, where Ted has meetings. The Chicago part was strictly for fun, and fun it was. We had our deep dish pizza, Italian food and Thai food, rode trains and buses to our destinations, knocked ourselves out at multiple museums, and even got to do a little shopping! What a fabulous place! This was my fourth time to Chicago (Ted's brother used to live there), but we did not always do what the tourists do when we came. One time was work related, and I did some shopping, but no time for all the other stuff.

On our first trip here, A was only a toddler, and we took that little guy and his umbrella stroller on the train to the Field Museum! What was I thinking?? He must've gotten hooked, though, because he has now, at age 19, been back to Chicago four times without me!

On the homefront, Nana asked N what the most exciting thing was at school today. When he told her that it was the thunderstorm, she asked if he was scared (long history of this). He told her no, that he had not been scared of storms since he was in middle school. This was way back when he was just a wee lad about 5 months ago!

Day 12 -- Chi Town

One of my many favorite works at the Art Institute of Chicago, Nighthawks. Oh, to be able to mine the depths of this fabulous museum!



At the bean in downtown Chicago after a full day at the Art Institute.

Day 11 -- People Art

As I enjoy this great big city and all it has to offer in the way of culture, art, and culinary delights, what interests me most is the people. My head is swimming with all I saw today. I saw gorgeous, breathtaking art, various famous vistas and am stuffed with fantastic Thai food, but what I find myself thinking about now are the people.

I spent quite a bit of time on the train traversing the city. The students cramming for their classes, robotic individuals plugged into ipod music, and tired folks leaving work all made for a menagerie of superb people watching. This southern girl does not see all the fashion she saw today in a year's worth of magazines . . . some expertly done, some in a category all their own, but "fashion", nonetheless. It is such a world away from home for me, and I am having a ball.

Day 10 -- Blogging Remotely

I tell you, I am dedicated to this cause! Thirty one days of straight blogging for the cause of Down syndrome (thus 31 for 21), and we'll see if it can be done. This is my first ever attempt at blogging remotely, not to be confused with remotely blogging! I am out of town and maybe I can post some pics of my remote location.

Poor little N is at home, but not home alone. Nana is in charge, so he will have a good time. He hated to see us leave, was a little on edge when we left, but he will be good and spoiled up when we return.

If you have time, Google "Rosa's Law" and any media attention it got. I look forward to doing some of that when I get back home. Have a great week!

Day Nine -- Eddie is on the loose

So many funny things, as I have said before, roll out of N's mouth, that I can't keep up with them all. Most recently, we were leaving a store and a car drove by as we were about to step off the curb. "HEY, there goes Eddie Murphy!!!", a totally convinced and incredulous N said. "Umm, I don't think that was him," I said. Oh, he was pretty sure alright and could not be talked out of it. Number One, Eddie is not likely to be visiting our state. Number Two, he is definitely not likely to be riding shotgun in a 1980-something gold Honda Civic. (No offense if that is what you drive. I just don't think Eddie is likely to be chauffered in one.) I still smile, though, to think about how sure of it he was, because he has been right many times when I have not.

Day Eight (of 31 for 21) -- Pride in Your Heart

We have had a few issues with N being overly competitive. This does not pose a problem until he is playing sports and publicly loses it. We have chanted the age-old mantra until we are blue in the face, "It doesn't matter whether you win or lose, it's how you play the game." Then we explain and give examples to illustrate this to the best of our abilities. Still, he gets so fired up when playing soccer or baseball that I fear for the other players. And with him playing in leagues for kids with special needs, we try to stress letting everyone have a chance at passing the ball, being successful, etc. We had to remove him from a soccer game once, and we always repeat "Be a good sport!" before the start of any game.

WELL. Today he went to a pep rally for his high school football team. After school he told me he learned something at the pep rally. Want to know what it was? "It doesn't matter whether you win or lose, it's how you play the game." Maybe it will catch on, coming from someone else. But the best part of what he learned (I think)was when someone said that it is not shameful if you lose, but that you always need to have pride in your team and pride in your heart.

Let's see if Mr. Cut-throat relaxes a little tonight at baseball.

Day Seven -- Football and Pickup Trucks

Because I have been married to my sweetie for more than half my life now, I am posting a picture of how he looked when we were in high school! I have unearthed this recently and our son, N., has been truly amazed by it. Not as much because his dad had so much more hair then, but because he played football! N loves some football and is wishing he could play. He and my husband have watched college football every Saturday since it started this season, and they have some big time, he-man bonding hours. I am glad to be included, as it really seems like I should only be invited on special occasions.

My husband says he liked me back at this point in our lives . . . I don’t know if that is true or not. We met in the fourth grade and this picture was taken in the tenth grade. I think there were others much more on his mind at this time than I was, but I’ll pretend with him. If I had known then what kind of a dad he would someday be to our sons, I would have grabbed on for dear life and never let him go. (Of course, if I had done that, we would not be married now, but . . . . just sayin’.) He is a most patient and kind-hearted man.

I am glad that going our separate ways for college ended up cementing the bond between us. I wish I could re-live just one day when he picked me up for high school in his pickup truck!

Special Exposure Wednesday -- Day 6

Polo shirts and khaki shorts were fine while it was so hot, but now N is required to wear a tie every day to school. Yes, a tie! Every day. He likes it and makes his momma ga-ga over him each morning.

For more great photos, go here.

Day Five -- "People First" Language

Just when I think I don't have as much "oomph" or guts or bravery as I would like, I realize I can write a fairly good email. This is not as good as making one's point in person, but sometimes it is pretty efficient. I had met with the editor of a local magazine about its new "Special Family" editions, and we talked about her desire to do stories on families and showcase kids doing activities, etc. It was a good meeting. Several months later, it came out. It was full of phrases like "autistic boy" and "Downs girl". I had to whip out my trusty laptop and fashion a thoughtful email about "People First" language.

I don't remember what I said, but it appeared to be received well. I gave reasons why the child comes first (because he/she is a child first) and then the disability. I gave examples of "boy with autism" and "girl who has Down syndrome", and she thanked me. It keeps me humble to remember my first lesson in "People First" language. It is such a subtle rearrangement of words, yet significantly important.

Who taught you "People First" language and who are you still trying to teach?

Day Four -- Perceptions

I am sure you have noticed how people like to type cast those who have Down syndrome as "all" having certain attributes. I am not talking about physical attributes, but things like, "They are all so loving and always so happy." This is not true. People with Down syndrome are not all loving (all the time) and so happy (always). Thankfully, many people with Down syndrome have these qualities, but to say that "they all" are this way is over generalizing.

It has also been said that all people with Down syndrome are stubborn. I have a theory about this, by the way. I think that we require so many fast transitions (and this is not something my son has ever loved) that are overwhelming. Often (not always!) kids with Down syndrome need a "heads up" that things are about to change. Otherwise, a type of "locking in" behavior shows up, also called stubbornness. At church, in classrooms, when it is time to leave home to go somewhere, our kids need a warning (maybe a timer?) and an idea of what is next. Sometimes a reward for moving on to the next thing is in order, too. After all, we as adults often like to know what is next and when we will be going there!

Day Three (of 31 for 21) -- Touchdown!

If you check out this story, you will find several heroes in it. First, the coaches (truly some thought went into this and some consideration for this player), the players (both teams), and enthusiastic fans. I like this story a lot. It reminds me that there are humans out there with hearts that beat for things other than winning and for others than themselves. Love it.

Click here.

Days One and Two -- 31 for 21

Okay, so I thought the button I grabbed in honor of Down syndrome was really cool. I just had no idea until this very moment that it means I am going to blog every single day for 31 days-- in honor of Down syndrome! So, I am going to get on it and give it my best shot. Some days it will be about Down syndrome and some days it won't . . . but all for the sake of acknowledging those with an extra chromosome on the 21st pair.

Today we went to a dance at the zoo. The event was called, "Gettin' Down for Down Syndrome". We saw a few faces we had not seen in awhile, but mostly lots of younger, adorable faces of kids with Down syndrome. N and some friends danced, ate burgers, rode the train, and admired the zoo animals. It was a beautiful day to be outside and to be surrounded by people who know what it is to raise a child with a certain set of challenges.

It made me remember the days when we got together as a group at least four times a year. Our old support group finally went to an "events only" format, instead of the monthly meeting style that it followed in its beginning. We had a day at the baseball field with our group enjoying the fenced area behind third base, which was perfect. We had a picnic and afternoon at the lake, a fall hayride and a Christmas party. After a few of us carried these events (you know how that is), we finally quit doing it. We tried to get leadership in key age groups, like preschool age, elementary age, etc., but no one stepped forward. I hated when we had to fold.

As the kids get older, I suppose there is less need for support and life just marches on. Your other kids have activities, and we grow apart as families. But there is something about the early days of having each other to lean on that you never forget. I am hugely thankful for the great moms that I still am in contact with and who have helped me along my path. They are among the sweetest parts of this journey.