Monday, April 6, 2015
I used to give my parents a lot of grief about how there are 8 million baby pictures of Leanne and about a half a dozen of me...and she's in all of them.
Can we just take a minute a marvel at that burnt orange, crushed velvet sofa? Folks, there are times when furniture crosses the realm of pure function and it becomes art. You're witnessing it, my friends. It really should be preserved in a museum somewhere...
I was determined not to let that happen with my kids. Hence, I started a separate blog devoted entirely to Merryn. I wanted to fill it with all of her vital stats - you know - just in case she someday asks me what her head circumference was at her 9 month check-up (Above average. WAY above average. I have the C-Section scar to prove it. You can thank your dad for that, Kiddo). I was going to impart all this valuable wisdom upon her; a toolbox to help her navigate her teenage years that spans beyond Noxzema and whatever dreadful teen soap the CW is airing in the future. (Do they even make Noxzema anymore?? I'm totally dating myself.)
Merryn's blog was last updated on November 15, 2013!!!
And Lydia? LOL! Let's not even talk about the little circle of the world wide web devoted entirely to her. Because it doesn't exist. Heck, CCE barely exists. You probably had to wipe a layer of dust off your screen after clicking on our URL so the text would be legible.
So, I apologize Mom and Dad. I get it. I totally get it. It doesn't mean you love me any less. You just got busy.
The other day Travis came home from work and I told him that I had planned a trip to Costco for the family because we were in desperate need of a diapers and Pediasure and we could just feed the kids at the snack bar and spare the dinner mess. I just needed one minute to upload some pictures off my camera and hang some clean laundry in the girls' closet.
Within 5 minutes he was asking me "Are you ready? How much longer? We need to get going..."
"Can't you see that this place is a disaster and I still need to load the dishwasher, feed the baby, sort the mail, and unpack the 12M clothes before we can go?!"
Travis said "By the time you do all that, it will be the kids' bedtime. Can't you just do that stuff when we get home?"
"You know what?" I snapped, "Forget it! You just go to Costco by yourself! The list is on the counter!"
He looked a little startled and he lowered his voice and hesitantly asked "Are you sure you don't want to go?"
"Of course I want to go!" I bellowed, "All day, every day, I'm trapped in this tiny condo with an endless supply of domestic drudgery to tend to and all I want is to get out of the house even if it is just a trip to Costco to buy some stupid diapers!"
"So you DO want to go?"
"Didn't you hear what I just said?! I can't possibly go!"
At this point, Travis sighed, hung his head and walked out of the room in defeat. The sleep deprivation/PMS/stress bomb is one not even Travis can dismantle.
That's why when I friend sent me a link to an article (click HERE) about motherhood by Jen Hatmaker, it totally hit home with me. I'll admit I didn't know who Jen Hatmaker was but apparently she's kind of a big deal. I understand her popularity may have something to do with Facebook. I wouldn't know. I don't have a Facebook page. I don't have time for Facebook. I don't have time for TV. Basically, I live under a rock. I'm oblivious to a lot of current news, pop culture trends, and the like. Why? Well, Jen Hatmaker describes it well when she says:
The baby years are short, kind of like five minutes…underwater.
Yes! That describes my life beautifully! So much about this article resonates with me: Former perspicacious business professional with a college degree turned stay-at-home mom with three kids in four years and a compromised acuity? Yep! That's ME!
And every day feels kind of like Groundhog Day; prepare meals, change diapers, drive to preschool, load the dishwasher, unload the dishwasher, kiss boo boo's, pick up toys, do laundry and more of the same.
And even though my life is quite monotonous, it's not boring. I don't even remember what it feels like to be bored! I've got an endless supply of things to do. And the majority of them are not remotely fun.
Travis and I reminisce "Remember before we had kids and we could do whatever we wanted?" "Remember when the only person whose food you had to cut was your own?" "Remember when you slept past 7:00am?" "Remember when the house was clean? Always?" Yeah, those were the days...
But what Ms. Hatmaker so poignantly points out in the article is that my monotonous days of motherhood are filled with moments that make life worth living. Sure, Lydia is the clingiest baby who won't even let me go to the bathroom without clutching my leg...but at night when she buries her sleepy little head in my neck and I inhale that beautiful baby scent, I am so grateful to have her in my arms. And that smile? I melt!
Sure, Merryn is a challenging, argumentative, strong-willed, and dramatic "threenager," but she tells me I'm her best friend (unless I won't let her have the iPad) and she is an invaluable helper when it comes to her sisters. Every day that child says something that makes me laugh and she never ceases to amaze me with her intelligence and kindness.
Then there's Josie - or "Sassafras" as her para calls her. Oh that child can be stubborn and defiant and all of the physical help she requires makes my back feel twice its age. But she is full of affection; she lives to give hugs. And after each embrace she sweetly says "Thank you for the love." Literally. She says that. To me. I'm her mom! She doesn't need to thank me for loving her; it's the most natural inclination in the world. But she does.
Then Ms. Hatmaker goes on to talk about how these little sanity-stealing, free time-eroding, house-destroying munchkins grow up. Quickly.
...and thank God that you got to parent this kid, that he was yours, that he walked into your arms at one and will walk out of them at eighteen, but my gosh…what a gift.
I would strongly encourage you to read this article. But don't do it if you have someplace to go and you don't want to cry off your makeup. Because it will yank on your heartstrings. Don't say I didn't warn you. And on the hardest of days, it will remind you that you're not alone and it's totally, definitely, undeniably, completely, 100% worth it.
* This post is dedicated to all of our blog and Instagram followers who have left comments and emailed me letting me know how you appreciate us sharing our story. We're humbled by your support. Thanks for following along on our journey.
Posted by EN at 4:54 PM
Sunday, April 5, 2015
Sunday, March 29, 2015
500 Followers?! Wow! You guys are the best! We never imagined when we started our little family blog that we would get so much support and positive feedback from folks all around the world! Your timing couldn't be better either; you know why? We just celebrated Josie JoJo's 5th birthday!
Mama Hop and Aunt Leanne joined us to celebrate this joyous occasion!
Aunt Leanne jumped right back into doing her aunt thing. She dressed the kids for bed and read the bedtime story.
I don't know what's happening in this photo but it looks intense and it makes me laugh so I included it!
After we got the kids in bed, Travis, Leanne, and I went out on the town and we bonded over a little karaoke! Leanne offered up the BEST performance of the night and she got the crowd rockin 'to "Cel-a-brate good times, Come on!" For video footage, click here:
On Saturday morning we set out for the noisy, chaotic, kid-infested abyss that is Chuck E Cheese. It's amazing how different the experience is for kids versus parents. They should really hand you ear plugs and a flask when you enter the premises.
Ah but the children love it so us grown ups happily endured two action-packed hours of running, climbing, shrieking, crying, fun. My head is still spinning.
So we played the games and earned the tickets...
...everyone except the birthday girl. She could care less about the games and tickets. Do you know why she asks to go to Chuck E Cheese at least once a day?
You got it! Enormous singing animals jamming out to today's pop tunes like Josie's personal favorite, "Shake it off".
Yeah why get yourself tangled up in the noisy herds of hyper children clamoring for tokens and fighting over games when you can just get comfortable on the floor and dance until your heart is content?
After we'd had our fill of pizza and pandemonium, we headed up the road to show Mama Hop and Aunt Leanne the progress on our new home!
Unfortunately, it was prepped for painting so every surface was covered in plastic and it reeked of varnish from the staining process on the fireplace and stairs. It wasn't the best tour but they got the feel for the layout...along with a fume-induced headache.
The move in date is just over six weeks away and we can't wait!
After a little afternoon rest, we got down to the ever-important birthday business of cake and presents!
Oh and in case you were wondering, Josie is perfectly capable of feeding herself...unless her Aunt Leanne is sitting next to her.
After the birthday girl was serenaded, musical gifts were opened, and cake was consumed, we took a step back and reflected on the last 5 years; five incredible years with this smart and sassy little girl who has illuminated our days with her smile. We feel so fortunate to get to be her family.
Happy Birthday Josie! We love you!
Posted by EN at 2:49 PM
Sunday, March 15, 2015
I've been at this Down syndrome sibling thing for oh, let's just say 29 plus years...But through the magic of social media, I've "InstaFriended" another incredible family who have even more experience than I do.
This is James (AKA "Jimbo'). He is a 53 year-old man with Down syndrome and he is an Instagram sensation! More than 8,000 followers are captivated by his smile and his message of positivity. He is a daily reminder that we are as happy as we make up our minds to be!
That's why I felt like a journalist who scored the "exclusive" when Jimbo's incredible sisters, Pam, Julia, and Patti agreed to answer questions posed by our followers to be featured on Confessions of the Chromosomally Enhanced. Without further ado, I am so honored to share their honest and inspiring story with you:
Background: James (aka Jimbo) is a 53 year old man with Down syndrome, who happens to be non-verbal. His parents had 11 children….he is the 9th in birth order. His sisters answering questions here are Julie, the 7th in birth order. She is married to Randy, with 4 adult children and 7 grandkids. Patti, 10th in line, is married to Sam, with 3 adult children. And, Pammie, 11th in line, is married to Marc, with 2 adult children. Jimbo lived in the home with his parents and siblings. His mom was a stay at home mom and his dad brought home the bacon!! :) His mother passed away in 1998 and he remained in his home with his dad until 2005, shortly before his dad passed away.
What are Jimbo’s living arrangements? How do the siblings work out the care of Jimbo in regards to shared responsibility and time spent together? How do they make sure he has the company he needs while sharing the load between siblings who have jobs/kids/etc?
He lives between Julie’s house and Pam’s house. Alternating weeks, Monday to Monday.
Julie is a stay at home mom/grandma who babysits a few of her grands and volunteers in the community. Pam is a mom with a part-time job that allows her to work around Jimbo’s schedule. Our adult children help us with Jimbo when we put out the call. Patti is a mom with a full-time job. She works it out to help us with Jimbo on the weekends when we need her to man-sit. (Hence, this is where the term, “Jimbo is the man” came from.)
It all just works out!!
How was Jim’s transition from his parents’ home to siblings? What were the biggest adjustments?
Surprisingly, it was a smooth transition. The alternating just happened to work itself out over the course of the first 6 months. We just figured out a way to make it work best for all of us. The biggest transformation that was noted by all, was the change in his personality. He was always a happy, loving guy but he was a 44 year old man living with an 88 year old man. He had aged beyond his years through no fault of our Dad’s. After a very short time, living with his siblings and our kids, he sprang to life. He suddenly was more active, on the move, being in the community more, meeting new people so he started acting younger and younger!! It’s been a very positive for him and all of us!!
Describe what a typical day is like for Jimbo. What are his routines?
Weekday….Rise and shine, breakfast, get dressed, make the bed, off to workshop at 9:00. Workshop until 2:30…running around town with whichever sister, niece or nephew picks him up or home to watch afternoon TV and whatever chores those sisters have cooked up. Dinner, bath, a little more TV….bedtime.
Weekends….Rise and shine, cooked breakfast (eggs are his favorite), get dressed, make the bed, off to whatever adventure those sisters or brothers in law have cooked up!! Usually some TV in the afternoon, dinner, bath, a little more TV….bedtime.
It’s a nice, simple life….keep calm, stop and smell the roses, etc., etc.
What makes Jimbo laugh out loud? What cracks him up??
There is so much to say here. Jimbo is so FULL of joy and laughter. Thoughts in his head that only he can know crack him up!! He laughs at sitcoms with slapstick comedy, TV shows with explosions. He thinks it’s hilarious to play a game of throwing balled up socks at us and we throw them back!! Flicking us with a towel produces uproarious laughter. Piñatas are a hit!! (Pun intended.)
Does Jimbo have any “hoarding” or “hiding” tendencies? (Asked by someone with this experience with a relative with Ds.)
He actually has a paper obsession. Small scraps of paper, business cards, wallet size photos, receipts, etc. Anything that will fit or can be folded small enough to fit nicely in his wallets. He has two wallets that get VERY large from all of the stuff stuffed into them. Sometimes his pockets are so full that they drag his pants down!! :) When stuff starts falling out, he saves it in the drawer of his nightstand. :)
Have you looked into employment services or mobile crew options for Jimbo to work? If so, what type of transportation have you arranged? Personal or is there a public system for people with disabilities?
Jimbo attends a day program Monday thru Friday that is a vocational/occupational program. The workshop has a program that provides the clients “warehouse” work experience and also has occupational classes and social events. Jimbo’s work experience includes packaging of nuts/bolts, stuffing envelopes, assembling gift bags, etc.
There is transportation available thru social services but we choose to use personal transportation because it works better into our schedules.
What do Jimbo and his siblings like to do together for fun?
Jimbo is included in all of our family activities as much as possible. We have a lot of get togethers, perhaps the nature of a large clan!! Just socializing, playing a game called Left Right Center is a favorite because it can include even the little kids. He loves to dance so having music is always a plus!! We’ve recently gone camping. Just the same stuff that every other family likes to do!!
How is Jimbo connected to his community?
The previous 2 questions pretty much answer this. Through the activities at his workshop he socializes with peers and through family connections he socializes with the typically developing community.
Has Jimbo fostered authentic friendships with both typically developing peers and peers with disabilities? How did the peer connection change after the school years?
At this time, Jimbo’s friendships are mostly focused on his family and typically developing peers through family contacts. He has friendships with peers with disabilities through his workshop and the social activities that they have.
How do each of you & Jimbo handle ignorance about Ds? Especially when it comes to people who aren’t thoughtful with their words.
We cannot be concerned in our day to day about the ignorance of others. Jimbo doesn’t care because he doesn’t fully understand so therefore we choose to ignore ignorance for the most part. We deal more with stares than with comments so we choose to just move on!!
I’m curious to know how you deal with the totally flippant and offhand use of the “R word” (like when referring to shoes or homework assignment) and I’m curious to know how your Ds siblings deal with it too.
First, let me state that you must remember that we are all over 50 years of age. (GASP!!) When we were growing up, the “R word” was used to describe our brother’s “condition.” We didn’t know any other way to describe Jimbo!! (I know this is very distressing to some who read this, but, we are trying our best to be honest here.) Sometime in our youth, the term Down syndrome was introduced to us and that’s what we were told was the proper term to describe Jimbo.
So….having said all of that….we were guilty of using the “R word” ourselves for years!! And then the campaign to end the word began and we jumped onboard. Now if I hear the “R word”, especially in the presence of Jimbo, I just look at the person using it and say, “Really!? Come on now…let’s just not!!”
Did you ever encounter others not being accepting of Jimbo, like your friends growing up? If so, how did you handle that?
Julie: Trying to recall if this was ever even an issue. Perhaps I chose friends wisely because I cannot recall having this be a problem for me.
Patti: I was super protective and defensive of Jimbo. If anyone gave him a look, a whisper, a stare, I was ready to literally jump into action. Punching may have been involved!!
Pammie: Ditto what Patti said because we were always together!! We have since outgrown this behavior!! For the most part our friends were fabulous!!
How often did your parents spend time with you separately (considering there are 11 siblings)? Just wondering how much alone time each needed with their parents.
Once again, let’s go to our age and the fact that we grew up in the 60’s-70’s. There wasn’t a huge emphasis on this type of thing back in the day. We don’t recall ever feeling deprived of attention. We think our parents were just doing the best that they could and focusing on working, raising, housing and feeding that many kids. We think we learned to love and care for each other by following their example. The “it’s not all about you” lesson. Jimbo was the center of everyone’s attention.
How did your parents explain to you that Jim has Down syndrome? Was it a big family discussion that took place or did that just evolve over time?
Julie: I was 3 1/2 when Jimbo was born. I vaguely recall his homecoming from the hospital and only recall realizing he wasn’t typical because he wasn't attending school with the rest of us. Back then, the state did not have inclusion in the public schools. He went to a special school for individuals with disabilities. Also, I remember asking our Mom questions as they arose and she would answer. It was not a big sit down discussion for me. I just wanted him to talk!!
Patti: I’m 12 months and 16 days younger than Jimbo. I don’t recall any huge revelation about finding out Jimbo has Ds except that he has two webbed fingers and I was most curious about that.
Pammie: I’m 2 years and 4 months younger than him. I don’t recall any discussion…I just knew we needed to watch over him. It’s just all we knew…it was just natural.
Do you remember having a talk with your own kids explaining Uncle Jimbo’s Down syndrome? What was it like? Or did you just answer questions as they arose? Did your kids even ask questions or did they just accept him because he was always there?
Julie: For me, it was a very natural discussion as questions came up about Jimbo. He has always been a part of the lives of my kids and now my grandkids so there have been lots of questions over the years. Just leaving the door open for frank and open discussion has been the best for us.
Patti and Pammie: Ditto…we all agree!!
How has the experience with a sibling with Down syndrome changed your life? Like if you could point to one or two things that you could say “I would not be the person I am today in this area if I did not have him in my life…what would it be?”
Julie: This is a tough one for me….because I get a bit emotional over it. I don’t really know who I would be without Jimbo in my life. I actually have a hard time visualizing that. I’m a pretty driven person with an inability to sit still. I’m always in motion….but perhaps less so because of him. He has a calming effect on me, makes me slow things down a bit, he’s comforting when I’m sad or anxious. So who knows what I’d be like without him…hard to say!!
Patti: None of us know who we would be without him. Certainly lesser….period!! I have always believed that Jimbo is a glimpse into Heaven.
Pammie: This is hard. You just don’t think about this until you’re asked. Our family would not have been so close. I know I wouldn’t be as patient, wouldn’t have as much empathy, wouldn’t be as tolerant as I am.
Does Jimbo find happiness and fulfillment in his life path? And what do you tell people who find it difficult to truly understand this fulfillment because it rides against the standards of our achievement-driven society?
We think he’s happy. Fulfilled? Isn’t being happy fulfilling? He is a part of a family that loves and cares for him deeply. Isn’t that fulfilling? He is doing his job, showing us how to live, love, and be better people.
Did you have a special bond with your brother when you were younger and did that change over the years?
Julie: I think being a part of the “youngers” in our family sealed the deal for me and Jimbo. I have no real memory of life without him. I was the original “Mother Hen” to my 4 siblings that are younger than me. We used to pull Jimbo around our neighborhood in a little red wagon because he couldn’t keep up….how could we not have a special bond? That bond suffered a bit in my teenage years because I was “too busy” (sad to say on my part) but we have just grown closer as we grow old together.
Patti and Pammie: We didn’t have an opportunity to NOT be bonded. We were with him all the time. It was fine with us….we don’t remember suffering for it. There was no burden, no suffering, it was just part of life. As we got older, got married and had families, we weren’t with Jimbo on a daily basis. But now, the bond is stronger than ever.
That was better than I even imagined it would be when I first asked these lovely ladies to guest blog post. Thank you, Pammie, Julie, and Patti, for this exclusive glimpse into your life with Jimbo. It was honest, humorous, and heartwarming. I only wish we lived closer so we could all hang out.
And thank you, Jimbo, for being you, and for enriching the world with your smile!
To follow @jimbo_is_the_man on Instagram, click HERE!
Posted by EN at 3:14 PM
Wednesday, March 4, 2015
This picture is old, but the message is worth repeating:
March 4 is a national day of awareness led by the Special Olympics. It's designed to end the use of the r-word (retarded) in popular slang. When the word "retarded" is used as a synonym for "stupid" or "foolish," it is insulting to individuals with intellectual disabilities.
Over the years, I've heard the word "retarded" thrown around by friends and acquaintances and I honestly don't think anyone intends it to be hurtful. I don't think people usually realize the association between an insult like "that movie was so retarded" and my daughter and sister. Historically, the word "retarded" was once a diagnostic term to describe an intellectual disability, like Down syndrome. It has since been incorporated into common vernacular to be used as a put down.
How does that sound to me?
Josie and Leanne have Down syndrome. Down syndrome is characterized by a degree of mental retardation. It's not a bad thing. People with mental retardation can learn; but it just may take them longer. It doesn't make them inferior - they just learn at a different pace.
You say: "That movie was retarded"
You mean: That movie was stupid/idiotic/foolish
Suddenly a term once used to describe a condition that my daughter and sister possess; a condition they cannot help; a condition that makes them different - but not less than - those without it, is suddenly equated to stupid...idiotic...foolish.
You simply said you didn't like a movie. You certainly didn't mean to call my sister an idiot. I get that. But it stings. Because she's not an idiot; and she did not ask to be a slower learner. In fact, she works twice as hard to achieve tasks that we take for granted. And she does it without complaining. I think that makes her pretty darn admirable; not an idiot.
So what am I asking of you? Remove the word from your arsenal of slang terms. If something is stupid, call it "stupid," not retarded. It's that simple.
Posted by EN at 12:59 PM
Friday, February 27, 2015
We sure hope you haven't given up on us because we are definitely not giving up on the blog. Since our last post, we've been blessed and humbled by some incredible feedback that reiterates how important our little blog can be. However, our current situation has contributed to sadly infrequent blog updates but we made it under the gun to offer you a quick hello before February is over...
Travis and I have always led a relatively adventurous and nomadic (bordering on downright crazy) life however this past year takes the cake! We had a baby, moved to a different state, started the girls in preschool, began the process of building a house, proceeded with getting acclimated to a new community, all while living in a 2 bedroom condo! And the next two months leading up to the big move in date aren't showing signs of slowing down! Between day-to-day responsibilities of running a household and raising children, volunteer work, hosting guests, preparing for the big move, planning for summer, etcetera, etcetera, etcetera...suffice to say that most days don't allow for a bunch of spare (uninterrupted) time to sit down at the computer and blog.
But before you roll your eyes and click the little "X" in the upper right hand corner of your screen, hear me out: We've got some really fun posts coming up - including one guest blog post that we're really excited about sharing with you. So please bear with us. We love our blog and we love our readers!
In the meantime, check in with us here:
Posted by EN at 9:42 AM