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Tuesday, October 31, 2017

Monday, October 30, 2017

Human Trisome Project

The Human Trisome Project is a ground-breaking research initiative into Down syndrome and researching the medical complexities that can accompany having an extra 21st chromosome.

I first heard about the vision for this project at a Global Down Syndrome Foundation medical round table discussion at the NDSC Convention a couple years ago - exciting to see it's up and running now!

The mission of this project is to "...significantly advance our understanding of several major medical conditions and human biology in general, enabling the developmental of novel diagnostic and therapeutic tools to serve not only individuals with Down syndrome, but also the billions worldwide who experience conditions affected by trisomy 21."

This research will be the larges and most comprehensive of its kind helping to answer the questions of why people with Down syndrome are predisposed to diseases like Alzheimer but seem to be protected from some kinds of cancer.

They are currently enrolling anyone between the ages of 6 months to 89 years.

They are enrolling:
- people with Down syndrome
- people who have a family member with Down syndrome
- healthy people who don't have Down syndrome

Basically anybody and everybody can participate in this important research project.

Click here for more information and click here to get involved.

Sunday, October 29, 2017

If I Could Go Back

Remember the online documentary about 5 roommates (4 with Down syndrome and 1 with Williams syndrome) in England called The Specials

Their website was recently relaunched where Seasons 1 and 2 are available to watch and they have a trailer to their new film they are releasing called "If I Could Go Back..."

It's a film geared towards new parents and made in corroboration with parents who have children with Down syndrome from around the globe, to include UK, USA, France, Nepal, Australia, Sweden, Spain. The parents are reflecting on their experiences and passing on some insight to new parents. If I could go back, what would I tell myself? I wrote myself a letter about that!

You can check out their Facebook page and YouTube channel, too.

Saturday, October 28, 2017

Missing Out On Beautiful

Missing Out On Beautiful is a collection of seven short essays about raising a child with Down syndrome written by Amy Julia Becker (author, including the book The Good and Perfect Gift: Faith, Expectations, and a Little Girl Named Penny).

Amy Julia is offering this collection of essays for free. The book downloads directly to your desktop for reading.

The last essay is actually an interview with her daughter, Penny, who is 11 years old and has Down syndrome.

Friday, October 27, 2017

Deja Vu at the Iron Mountain Iron Mine

Last month when we went to Wisconsin I thought it would be neat if I could take the kids to Iron Mountain Iron Mine. I went there when I was 13 and my brother was almost 11. I thought it would be fun to take Kayla and Lucas to a place I had been when my brother and I were around their ages.

My sister hadn't been before, so she got to experience it too.

Back in the day ... with my mom, uncle, and brother.

Now ... with Lucas, Kayla, and my sister

My brother and me

Lucas and Kayla

Back in the day 

And now my own kids posing with the big tire - who would have thought?







Thursday, October 26, 2017

Sweet Caroline and the Red Sox

It goes without saying that I'm a Red Sox fan. Unfortunately for me, the local minor league team here in Charleston (the RiverDogs) are a Yankee affiliate. We have gone to several games though and the kids enjoy it. A few of those games the RiverDogs have played the Greenville Drive. The Drive happen to be a minor league affiliate of the Red Sox. So it's cool to go to a Boston/New York rivalry game - minor league style.

Greenville is only 3 hrs away so this summer we went to see a game in their stadium - which is built after Fenway Park - Pesky's Pole and the Green Monster to boot!




A tradition at Fenway Park is the singing of the (unofficially official) anthem of the Red Sox: Sweet Caroline by Neil Diamond. It's played at every game. They do the same at the Greenville Drive games, too. It's not quite like being at Fenway Park, but for living in SC it's as close as I'll get.

Kayla got into the song - and as you can see by the video - she makes a friend wherever she goes!








Wednesday, October 25, 2017

Medical Research in Down Syndrome

Down syndrome continues to be the most common genetic disorder and the least funded. There is so much to learn about the connections to the 21st chromosome and research is so important.

It's important not just to the individuals with Down syndrome and their families - but it is important in the general population as well. There is a huge connection with Down syndrome and Alzheimer and potential cures for Alzheimer can help the general population. There is also interest in researching in why people with Down syndrome are less likely to get certain cancers - like breast cancer - or more likely to be diagnosed with leukemia, but have a higher rate of survival.

Frank Stephens, a self-advocate, testified on Capital Hill regarding the importance of funding for Down syndrome research. It's important for his voice to be heard.

As he states, people with Down syndrome are "...a medical gift to society, a blueprint for research into Alzheimer, cancer, and immune system disorders."


You can also watch the testimony of Michelle Sie Whitten, Co-Founder, President, and CEO of the Global Down Syndrome Foundation.

What can you do as families? Have you registered with DS-Connect: The Down Syndrome Registry? You can connect with researchers and health providers and possibly participate in certain clinical studies.

Tuesday, October 24, 2017

I Love the 80s

We were fortunate to spend another fun family weekend at Camp Victory Junction last weekend.

The theme was "I love the 80s!" How fun for me since I grew up in the 80s :) We were originally on a wait list to attend. A week before camp we found out another family couldn't attend so I didn't have much time to figure out our 80s outfits, but I think we managed ok with what we had.

Joe and I pegged our jeans and I scrunched up some big socks. An off-the-shoulder shirt with a big black belt and a side ponytail completed my look. It was easy to throw together Kayla's outfit- bright colors, denim jacket, big belt. Lucas was a little harder, but athletic/track pants seemed to be big for boys and he wore a shirt with ADIDAS since that was a popular brand.

I was disappointed with my hair though and that I no longer have the type of hair (ie no bangs!) to curl and tease and make big - haha!

We had a nice weekend away and I enjoyed not having to figure out meals for a couple of days and also not having to worry about what Kayla can eat. They accommodate for dietary needs.












Monday, October 23, 2017

Parenting and Perceptions (Repost)

I originally posted this nine years ago. I occasionally still feel this way; so this is a good reminder to myself.
~~~~~~~~~~~~~~~~~~

As a new mom one thing I struggled with (and sometimes still do) is Kayla's behavior in public and the perception other people might have.

It's not necessarily what I would consider really bad behavior either; she doesn't throw fits/temper tantrums, beg for toys or candy, cries or whines...but she doesn't listen. She takes off down random aisles going where she wants to go. She doesn't have a care in the world or even cares if we're following her. She doesn't care if she's not staying with us. How frustrating is it to call your child back "stop!" "turn around!" "come back here!" and they completely ignore you? Or they think it's a game and see how fast they can get around the corner before you catch up to them.

Kayla was never one to just stand in one place while I browse the shelves for whatever I'm looking for. It would make me a little sad to see other kids just walking nicely and calmly holding their parents' hands, or just standing by their side; my kid would have to be in the cart or else she would take off. (Over the last year she has become better at walking with us, but still has her moments of taking off.)

Same thing with restaurants. It stresses me out to go out to eat with Kayla. We rarely eat out as it is, but now I try to avoid it if possible. She won't stay seated. Up, down, up, down. Fidgety, trying to climb under the table, over the table. I bring things to keep her occupied but it just doesn't work...everything else is so much more entertaining. I hate saying over and over "Kayla sit down!" "Just sit still!" blah blah blah...so we just don't eat out.

I know all parents want and expect their kids to behave - especially in public. No one wants to be the parent who has the kid acting up and everyone else is discreetly trying not to stare at you.

But kids will be kids. They have short attention spans, they're curious, it's hard for them to do grown-up things, shopping can be boring for them, they have moods, they're not always well-behaved.

So while yes, I do expect my child to listen when I'm calling her, or telling her to stop, sometimes I think I expect too much from her. I think I've put expectations on her to be good all the time and when she doesn't I get frustrated. And no child can be "good" all the time. It's not reasonable to expect perfect behavior (although it would be nice!)

I think I've put some unreasonable expectations on her because she has Down syndrome. Because if she's running away from me and not listening when I'm telling her to stop and I end up chasing her down...then people might see that and think "oh she's got her hands full with her daughter who has Down syndrome." Because if we're in a restaurant and she's not sitting still (and I mean standing up on the chair, sitting down, standing up, getting down) someone might look at us and think "thank goodness I don't have a child with Down syndrome; look what the parents have to deal with."

I expect her to have this oh-so-perfect behavior because what if our family is the only interaction some other family has with Down syndrome and think negatively because of it? Whereas if she was "good" all the time then someone might observe and think "oh having a child with Down syndrome isn't so bad."

Of course I have no idea what anyone else is thinking. These are only my thoughts on what they might be thinking. But I do worry about what other people's perceptions are. I worry if they're going to judge a whole segment of society - people with Down syndrome - based on what they see of my daughter.

I know this isn't fair to Kayla at all. It's not fair for me to expect her to be "on" all the time just so she can be a "positive face for the Down syndrome community." She's not the poster child for Down syndrome. And if I don't want people to perceive her "negative" behavior as an attribute of Down syndrome then I need to stop doing it myself..because sometimes I do wonder "would she be acting like this if she didn't have Down syndrome? Would she be this active and impulsive?" And if so would I care as much? Would I worry so much about what other people thought? Would I stress so much when we go out in public? I need to see her personality for what it is - a highly active and curious child (which totally clashes with my more mellow style!)

I do know that her "behavior personality" isn't specific to Down syndrome. I know a lot of typical kids act the same way and some of it has to do with age too. But when you have a disability it feels like everyone is judging you/your child on that instead of it just being "their age."

I don't even know what exactly it is I'm trying to say here! Just that sometimes parenting really is hard; trying to figure it all out - how to raise these little people that depend on you for everything. Trying to do the right thing by them...sometimes failing, sometimes succeeding...but learning through it all.

Sunday, October 22, 2017

Guardianship Thoughts

Last week I watched a webinar about the Beyond Academicss Program at the University of NC Greensboro.

Last year I blogged about how impressed I was with their program after talking to them at the NDSC Convention and this webinar just reinforced to me how much I would love for Kayla to attend their program, or one very similar to it.

Just a few examples of the success their graduates have had compared to people with intellectual/developmental disabilities across the nation:

61.5% were employed compared to just 35% across the nation
54% lived independently/semi-independently compared with 36%
77% had checking account and wrote their own checks compared with 29%
92% completed volunteer/community service in last year compared with 19%
100% registered to vote compared to 62%

There was a lot of great information shared on the webinar but something stuck out to me that I didn't realize, or hadn't thought of before.

To be eligible for the program students have to be their own guardian - the parent(s) can not have guardianship.

I'm not sure if all programs have that requirement - and it's not mentioned on any of the ones I looked at on Think College, but I imagine the same would be true for any of them.

It does make sense that if you're sending your child away to a 4-yr residential program like this that you would not have guardianship of your child, but it was not something I had given a thought about.

We still have a few years left before we decide if we're going to pursue guardianship of Kayla or not. I know I don't want to have to do that, but it's something we really need to research and figure out what we're going to do.  If having guardianship impacts her ability to attend a program like this we definitely need to take that into consideration.

There are some options to not pursing full guardianship though. ABLE South Carolina has an informative video about Supported Decision Making: A Family's Perspective.

This is something we will be exploring as a possibility for Kayla.

Saturday, October 21, 2017

Intelligent Lives - A Documentary

Intelligent Lives is a new documentary film by the award-winning producer/director Dan Habib set to be released in 2018. The film follows the lives of 3 individuals with disabilities whose lives would have much different outcomes if they had been born even as recently as 1970 - most likely by being institutionalized.

"Academy-Award winning actor Chris Cooper, the narrator of Intelligent Lives, unpacks the United States’ sordid history of intelligence testing, which led to people with intellectual disabilities carrying a clinical label of “moron,” “idiot,” or “feeble minded.”  The three central characters of Intelligent Lives — Micah Fialka-Feldman, Naomie Monplaisir, and Naieer Shaheed — would have been labeled this way had they been born in the first half of the 20th century. Their parents would have been counseled to send their children to live in an institution alongside hundreds or thousands of other people with disabilities. They might have been among the approximately 65,000 Americans forcibly sterilized in order to “improve the stock” of humanity during the U.S. eugenics movement. As recently as 1975, Micah, Naieer, and Naomie would not have had legal access to a public education."

See a preview of the film here and see a list of screenings here.

You can also follow along for updates on the FB page.

Friday, October 20, 2017

Visiting Family in Wisconsin

Last month we went to Wisconsin for my grandmother's funeral. Initially I didn't think we would be able to make it because of the stress with dealing with the impeding Hurricane Irma. Thankfully that didn't impact out area too much.

The first of our 3 flights to get there. We were all smiles. By the end of the 3rd flight (one of those very small planes where we were sitting in the very back) I had almost lost the contents of my stomach and Kayla and Lucas were also feeling a bit queasy! Fun times. 


Kayla honed in on how difficult this was for my grandfather and she was constantly by his side trying to comfort him.

Even during the service she managed to sit next to him and as you can see she made sure he knew she was there for him. One of my cousins was sitting on the other side of Kayla and at one point she had her hand up on both of their shoulders (I didn't manage to capture that photograph though).



A little scenic spot we drove by when we went back and forth to our hotel; finally had to stop and take a picture. I imagine it looks even more pretty now with the fall colors on the leaves by this time.


A couple of funny stories from Lucas' observations.

My great-grandma lived on one side of my grandparents' house up until she died in 1989. I don't know the occupants of the house now, but that house will always be "my great-grandma's house" to me. I had also been explaining to the kids that their great-grandma was who passed away.

Lucas and I went outside to throw the frisbee and looking at what was my great-grandma's house he said, "They have a barn?" (It kind of does resemble the look of a barn).
I said, "No that's great-grandma's house."
L, "Oh so they lived in separate houses?"

Hahahahaha!

I explained that it was my great-grandma's house and his great-great grandma's house. It was his great-grandpa (whose house we were at) mother's house.

A little while later as we were still outside playing, my great-uncle and his wife came out of my grandfather's house. This is my grandfather's brother - and he lives on the other side of my grandfather's house.

We chatted for a few minutes and then they continued walking and when Lucas turned around he realized they went in that house and asked me, "They live right there?"

Me, "Yes. That's great-grandpa's brother."
L, "So the people in these 3 houses are all related?!"

I laughed and told him yes, they used to, until their mom passed away. It's not a relative in that first house anymore.

I'm glad it all worked out and I'm glad the kids and I were able to be there with my family.

Thursday, October 19, 2017

Sam's Top Secret Journal

A Middle Grade mystery book in which the main character has Down syndrome?

Yes, please!

That's exactly what you'll find in Sam's Top Secret Journal - a 3-book series. (We SpySam's Secret Island and Memorial Day).

Sam, who has Down syndrome, is sometimes "bullied for the differences kids perceive in her." But the main story is how Sam and her brother "embark on their first big adventure...full of fun, suspense, and spying." 

The author (Sean Adelman) has a daughter with Down syndrome and the things Sam does in the books are based on his own daughter's abilities.

I'm not aware of any other fictional book in which the main character has Down syndrome - especially for Middle Grade books, so this is a much-needed book series.

I think Kayla will find this series under the tree this Christmas and it will be fun to read it with her and talking about how Sam also has Down syndrome - a character she can identify with!


Wednesday, October 18, 2017

Woodbine House Books and DVDs

I think Woodbine House is the largest publisher of books and DVDs for disability issues. They have a large collection of products organized by disability ranging from children's books to books for parents and professionals and self-advocates.

A sampling of topics that you can find books on: ADHD, Celicac Disease, Down Syndrome, Cerebral Palsy, Literacy & Reading, Cleft Lip and Palate, Deafness ... and many, many more.

In honor of Down Syndrome Awareness Month (through the end of October) 40 books and DVDs are 30% off. No code needed; discount applies automatically.

I have several of the books and I think my next purchase will be Boyfriends and Girlfriends. Kayla says she's not interested/doesn't want a boyfriend "NOOOO!" is her emphatic answer, but I'm sure that day will come! No harm in going over this and talking about relationships and expectations with her now.


Tuesday, October 17, 2017

Sometimes it's Not About Down Syndrome (Repost)

This post is another repost from a story I shared seven years ago.

Last week Kayla and I went in to Boston's to pick up the gluten-free pizza I ordered for her.

Kayla, being Kayla, was all over the place. Ok, not too bad this time actually, just up and down from the bench and being very talkative. So the employee at the door couldn't help but notice her.

Several minutes later the pizza was finally ready and we were on our way out.

This employee, an older teen I think, or in her young 20s (I'm not good at guessing ages!), made a comment to me about Kayla.

She said, "She reminds me of my friend's niece." I said something like, "oh she does?" She replied, "yeah she looks like her."

If you have a child with Ds and someone makes a comment like that, 99.9% of the time they are trying to tell you they know someone with Down syndrome.

As I told my mom later - it's like a 'code' phrase to say "Oh I have a sister, cousin, friend etc, that looks like her" or something along those lines.

So it felt only natural to me to reply, "Oh she has Down syndrome too?"

The employee said, "Umm, no. She has blue eyes, blond hair, and the same kind of haircut." (we had just come from getting Kayla's hair cut shorter.)

Oops.

Guess I learned a lesson - it's not always about Down syndrome when it comes to my child...and that's nice to know.

Monday, October 16, 2017

That Taboo Topic

Two years ago, during 31 for 21, I blogged about the importance of sex education for people with disabilities - and it's still important for this topic to be discussed.

As I said in that post - sex education isn't just about sex (safe sex/abstinence) but it's also about healthy relationships and what is/isn't appropriate. It's about learning about boundaries and personal space and owning your body and knowing you can say no.

With the current news focused on the latest man in position of power sexually harassing/assaulting women, it's important that people with disabilities are involved in this conversation.

It's so important because 80% of women with an intellectual disability will be sexually abused. (The article I linked to for this statistic in my previous post is no longer available).

Aside from that glaring statistic - people with disabilities have sexual feelings too and have been treated as children well into their adult lives and not been given the chance to explore their sexuality.

This article explains Why Sex Education for Disabled People is so Important. And it isn't just coming from the 'experts', but from people with disabilities who were interviewed for this article.

"When it comes to disability and sexuality, a large part of the issue lies in the fact that disabled people are so infrequently included in the decisions made about their bodies, their education, and their care. So what do people with disabilities wish they had learned in sex ed? This is what students and adults with disabilities said about their experience in sexual health courses and what they wish they had learned."

Sunday, October 15, 2017

The Big, Red, #8 Buoy

Last month we went to Hilton Head for a quick weekend getaway.

We went to the beach for a couple of hours to walk around and for Lucas to use his metal detector. Beaches are supposed to be prime spots for metal detecting, right? We've struck out every time. I think he's found a penny the handful of times we've been to the beach. At that penny was actually found at the playground right before the beach!

It was still a nice, albeit windy, day out for a walk on the beach. On our way there we stopped for a quick geocache find.



Then we continued on to Coligny Beach and stumbled upon this:

As we were walking we noticed a crowd of people around this big red thing in the distance and everyone taking pictures. We got a little closer and could tell it was a buoy. Definitely not something you see on a beach every day!

I wondered to Joe why there was a buoy on the beach? Where did it come from? What is it doing here? I recently read about a boat that washed ashore somewhere in FL from Hurricane Irma (or maybe it was Maria), and wondered if a hurricane brought this ashore in Hilton Head.

So Joe turns to what else? Google. It didn't take long for him to discover that this Coast Guard Buoy #8 did indeed wash ashore from Hurricane Irma. They are still trying to figure out how to remove it (13,000 lbs!) and return it to Port Royal Sound.

A short break on bench swings after the walk on the beach.


Another geocache found on Hilton Head at Jarvis Park...

And some beautiful scenery at Jarvis Park; it is a really nice park with a large walking trail and beautiful views.

Saturday, October 14, 2017

The Road We've Shared

The Road We've Shared  (TRWS)"...focuses on caring for and supporting people who have Down syndrome and are over the age of 18..."

Kayla is 14 and it hit me recently that in 4 short years she will be 18. How is that possible already? I'm not ready for my child to reach the age of adulthood already. I'm glad this website/online community is available for parents and caregivers who have (adult) children with Down syndrome as those experiences present a different set of challenges than when our children are under 18.

The main focus area of TRWS are: Policy/Advocacy, Health/Research, Elder Planning, and Social History/Outreach.

A new initiative TRWS started at the beginning of this month is Life After High School - New Online Courses for Adults with Down Syndrome.

This new project includes these goals, among others:
- Allow self-advocates to the be the experts
- Provide opportunities to form friendships based on common interests
- Course materials that allow for a wide spectrum of abilities
- Support continued learning into adulthood

Registration is open for the first two courses - "For the Love of Musicals" and "Let's Get Ready to Rumble."

If you have an adult child with Down syndrome, or are a caregiver, check out The Road We've Shared!

Friday, October 13, 2017

Internships for People with Disabilities

Some welcome news coming out of Albuquerque, NM about Presbyterian Rust Medical Center. The hospital has partnered with Adelante Development Center, Rio Rancho Public Schools, Vocational Rehab, NM Dept of Health, and U of NM Center for Development and Disability to offer internships for people with developmental disabilities who have graduated high school and are between the ages of 18-22.

Interning is a great way to gain job skills, but can be hard to find for people with developmental disabilities. So far this program is producing positive results with many interns from the previous year landing paid jobs.

It's encouraging to read about opportunities like this and hopefully more hospitals will partner with school districts for providing internships.

It's definitely a step in the right direction showing people with disabilities are capable if given an opportunity.

This internship program is part of a wider network of intern opportunities across the country with Project SEARCH. Their high school transition program "...provides real-life work experience to help youth with significant disabilities make successful transitions from school to adult life."

You can see what programs are available in your state (and a few countries as well!)

Thursday, October 12, 2017

Likable or "Leg"ible

Because of her enunciation Kayla's speech sometimes takes some deciphering to figure out what she is saying. Thankfully she is usually able to describe it with other words, or point to an object, or act it out so we finally get that 'a ha!' moment.

We had just such a moment the other day when I picked her up from school.

I told her she had some homework/studying to do of her vocabulary words and said, "You know your list? Like 'visible'?"

Kayla, "Yeah I know that."

Me, "This week your words all end in either 'able' or 'ible' so we've got to study those."

K, "Lovable!"

M, "Yep, lovable, that's one of your words."

K, "And (insert word that I thought sounded like 'likable').

M, "Likable?"

K, "No, (repeats word that still sounds an awful lot like 'likable')"

M, "LIKE ABLE? Is that what you're saying?"

K, "No, (repeats word), you know? Like this?" - She lifts up her leg and rubs her hand on the side of it. "LEG" ible."

Me, busting out laughing because I get it now.

M, "OH! Kayla that's 'legible' - what your handwriting is not! It's not pronounced "LEG"ible! It's leh-gible""

K, "Ooooh!"

And then we both got a good laugh out of that.

She knew the word began with LEG and thought it was pronounced that way. It really was funny when she knew I was saying "likable" and she knew that wasn't the word she was saying so she pointed out her leg since she thought it had to do with 'leg'. Ha!

Wednesday, October 11, 2017

When Life Gives You a Rainbow

It's not every day you see a rainbow, but when you do, they sure can be a mood-lifter.

The vibrant colors appearing out of place against the blue sky and white clouds. How can you not ooh and ahh over one?

That's just what Kayla and I did today, and yesterday, too. Rainbows two days in a row! Yesterday we were only able to glimpse a small part of it. Today we saw almost the whole thing. It really was beautiful.

Kayla spotted it first - and she was so excited. "Mom! There's a rainbow!" and sure enough there it was. We spotted more of it on our way home - both of us squealing, "Oh look! there it is!"

Kayla took a few photos as we were driving home. Instead of 'stop and smell the roses' it was 'slow down and admire the rainbow'.






Tuesday, October 10, 2017

To My Younger Self

I originally shared this "Letter to Myself" a few years ago, but wanted to repost it for 31 for 21 (Down Syndrome Awareness Month).

Dear Twenty-Something Michelle,

Hello! This is a letter from your future self. It looks like you are settling in nicely to your life. Things seem to be going well, you have a great husband, a job, a new house. Ok ... a not-so-new house considering we are talking about military housing!

You are now at a point in your life when you and Joe want to start a family. Great! Now settle in for the long haul. I don't mean to burst your bubble, but this isn't going to happen as easily, or quickly, as you think it might. Prepare to be on the 'trying to conceive' journey for over a year.

I will say that thankfully you won't need to start fertility treatments, although you will have that initial appointment or two to get the ball rolling.

Since you don't want to find out the gender as you'd like to keep that a surprise, I won't spoil that for you by revealing it in this letter.

I do, however, want to give you a heads up about your newborn baby. Your first born child will be born with a medical condition. Your child will have a slightly different genetic make-up than you or Joe have - something to do with the chromosomes.

I'm not telling you the specific diagnosis because I think it's important for things to happen the way they were supposed to happen. I just want you to know that you will receive some news upon the birth of your child. News you weren't expecting to hear, and news you don't really imagine for your child.

But I also want you to know, and to remember, that even though your child will have this life-long diagnosis (there is no cure), this child is still your child. This child is still the child you and Joe created together. This child is still the child you get to take home and raise. This child is still the child you wished and hoped for. This child is still the very much wanted, and loved, child you will carry for 9 months.

There will be some challenges, but there always is in parenting. It is ok to feel whatever you will feel in the moment. It is ok to be afraid of the future because the unknown can be scary.

As I'm writing this to you now, this child-to-be will be 11 years old in 6 days. This child has already seen much and accomplished much in 11 years.

This child just went to 2 sleep-away camps this summer and had a blast - I'm sure that's something you won't imagine happening when you receive the diagnosis.

Enjoy your newborn. Cherish your newborn. Raising your child, getting to be a parent - that is what matters and what counts. The diagnosis you can deal with one day at a time. The diagnosis will become secondary.

I'm not going to promise that everything will be easy, because it won't.

But I can promise that everything will be all right, because it is.

Monday, October 09, 2017

Camp Rise Above

Kayla and Lucas have been fortunate to attend a local camp that serves kids with different health issues for the past few summers.

Camp Rise Above is a fun 2-day camp experience (with plans to expand to be a weekly over-night camp) that offers rock climbing, archery, fishing, canoeing and a trip to the water park among other activities.

Kayla started attending this camp several years ago going to the session for kids with Heart and Kidney issues. This summer they added a camp that was for kids with Down syndrome. I was a bit conflicted as she had been going to the Heart and Kidney one for a couple years and did fine at that session - I didn't feel she 'needed' a camp specifically for kids with Ds, and I liked the idea of her being in the other session because she was with mostly typically-developing peers. I'm all for inclusive opportunities like that - not just for Kayla, but for the other campers to have the experience of being included with someone who has a different chromosome make-up. But one of Kayla's best friends was going to the Ds camp and I could split car pool time with her mom (which helps because the camp is about 45 min away), so she went to the Down syndrome session this year.

Lucas attends the session for kids with asthma. He was diagnosed a few years ago, but thankfully it seems to be pretty well under control.

Kayla didn't attend the camp last year because the date coincided with a sleep-away camp she attended. This past July we were in Greenville (3 hrs away) walking down Main St when this guy walking towards us stopped to ask me, "Is her name Kaylee?" I said, "It's Kayla." as I'm trying to figure out how he must know her; and then he asked Kayla if she remembered him from camp. He was one of her counselors from a couple of years ago and said she was one of his favorite campers (and asked about her last year when she wasn't there). I think the feeling was mutual as you can see from this photo of a couple of years ago. Small world, indeed!



Lucas had a great time with his counselor, and if I remember right, he's going to Spain ...hopefully he'll be at camp next summer so Lucas can hear all about that.


Our local ABC News 4 channel did several news pieces highlighting the different camps and experiences offered to the campers.

This video has several clips of Kayla - the first time she appears she's coming down the water slide in a blue and yellow swim shirt.


Lucas is in a couple quick scenes in this video - sitting on the picnic table while talking about the cookie challenge.



I'm glad they have this opportunity to attend this camp and they look forward to it every summer.