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Friday, September 08, 2017

They Are in the Moon

A few weeks ago, out of the blue, I had this conversation with Kayla.

Kayla, "Pepere went to the moon."
Me, "What are you talking about?"
K, "You know your dad? He died?"
M, "Yeah..."
K, "You know your dad's in heaven?"
M, "Yes..."
K, "Pepere went to the moon."
M, "Since Pepere's in heaven he's visiting the moon?"
K, "Yeah! He's in the moon!"
M, "Did Pepere tell you that in a dream or something?"
K, "Yeah! He said Hi Kayla. I love you. I'm in the moon."

Sometimes I don't think the finality of death is clear to Kayla or that she fully comprehends what it means because she has said she wants to go to Pepere's house. When I remind her that we can't go see him in his house anymore because he died she'll say that he can come to our house. I tell her he can't do that anymore either because he's buried in a cemetery in FL.

But then other times she'll say something so profound like this image of him being in the moon.

I never thought of it that way - the souls of our loved ones being in the moon - but now that she's verbalized it I think it's a beautiful thought.

She has said this several times since then; telling me my dad is in the moon and saying the moon is bright from my dad.

My grandmother (my mom's mom) passed away the evening of Sep 5th. On Sep 5, 6, and 7 there was a full moon. Thanks to Kayla I'm now inclined to think the moon was full those 3 nights, and a little brighter, because my grandma joined my dad in the moon.

My grandma was 88 years old; married for 66 yrs and had 6 children

(This isn't everyone) They have 11 grandchildren (+2 predeceased at birth) and 12 great-grandchildren

Such love between them. My grandfather was her caretaker the last several years. 


A 4-generation photo shortly after Kayla was born.

It goes without saying that my dear grandma will be deeply missed.

Friday, August 25, 2017

Poetry by Kayla

Last year in Kayla's Lit class they did a unit on poetry. One of their projects was to create their own collection of poems that had different elements like haiku, simile, metaphor, rhyme, etc. I'm sure Kayla's teacher helped her with sentence structure and fleshing out the body of the poem once Kayla came up with topics, but overall she had to come up with the ideas and verbalize as best as she can what she wanted to say in her poems.

Here are a few of my favorite poems with my favorite being her metaphor of life as a mountain.

Life Is A Mountain
Life is a mountain
high in the sky
It makes me tired
to climb up the mountain
The mountain is big
with pretty things to see

Haiku
In the sky birds fly
High above the waves they fly
the birds are seeing

A Happy Birthday
Lucas, Happy Birthday!
You're nine years old today
You are a nice brother
I don't want any other
You are sleepy today
But with you I love to play

The Dolphin
The dolphin is swimming in the sea
The dolphin likes singing and dancing in the sea
The dolphin is swimming in the sea
Just like me

Thursday, August 10, 2017

Included In Archery

Kayla's tried archery the past few years at a couple of the summer camps she attends and has generally seemed to enjoy it.

Last year she signed up to be on the archery team at school. I knew nothing about what this would entail. I've never been to an archery tournament before - I didn't know anything about the tournaments, how they work, how they are run; and I didn't know how Kayla would handle all of that. Shooting at a tournament is different than shooting for fun at camp.

The coach for her school team is a phenomenal coach. Truly, he's awesome. I don't know if he's ever coached a student before with an intellectual disability before (and pairing that with ADHD), but he treated Kayla as if she was capable; because she is capable and she can learn. He expected the same of her as he did everyone else, while also recognizing her limitations ("when she slows down and concentrates she's right on target!"). He is patient and encouraging and he just gets each of the archers individually. He learns their strengths and weaknesses. I'm so glad he sees the potential in all archers. And I do mean all. I have seen him give tips to archers on other teams after being at the line and watching them shoot.

Her school is part of the SC Archery in the Schools Program (which falls under NASP). This first year of participating in archery was a great experience - we found it be inclusive and she was welcomed and accepted. Her lane mates (which were sometimes from other schools) were friendly and encouraging; and Joe and I both had someone come up to us and tell us how great it was to see her participating (one was a coach from another team who is also a Special Education teacher). There were high-fives from teammates, archers from other schools, and from DOR officials.

We also found archery, and SCNASP, to be accommodating to her needs.

When I say they've been accommodating I don't mean in the way of giving her extra arrows, or allowing her to shoot at only 10 meters instead of both 10 and 15 meters. No one felt sorry for her or gave her allowances because she has Down syndrome.

The accommodations were simple things like requesting she be on the left side of the lane so she can draw her arrows in front of her instead of having to reach behind her.

Her coach also went to the target with her to assist on the scorecard. This is an area where her convergence insufficiency comes into play. Here is what the scorecard looks like (like those standardized tests where you bubble in the answer.) Her eyes still have trouble teeming together and following across a line of text - especially if it's small and virtually no space between the lines. When we practiced filling out the scorecard I had my finger on the fourth line down and told her to bubble in a score of "6" - she circled the 6 on the third line. So I knew that keeping score (and you score the card of your lane mate, not your own) would be difficult for her to do.

Other than that she follows all the rules of a tournament just like everyone else and she learned all the rules and routines. She waits on the line for the whistle, once the whistle blows she knocks her arrow and shoots 5 arrows, she hangs her bow up. She stands back and waits for everyone to finish and listens for the 3 whistles to go retrieve the arrows from the target and put them back in her container. She gets her bow off the rack and stands at the line waiting for the whistle to begin the next round. I'm so proud of her for learning all of this to be able to participate in tournaments.

On her first tournament she scored a 36. As I mentioned, I knew nothing about archery or what a score means. To put that score in perspective a perfect score is 300. Ha! When I looked at what the rest of her teammates' scores were the next closest one to her was a 98 and everything else was in the 100s and 200s.

 Her next tournament she finished with a score of 76! I couldn't believe how much she improved on her score from her first tournament and I was hoping that by the end of the season she would break into that 100 mark.

This happened at her 3rd tournament. She cracked 100 with a score of  exactly 100. I was so, so excited and proud of her for reaching (what I considered) a milestone moment (score).
She had her highest score at Regional in Myrtle Beach with a 113.

The middle school team didn't qualify for State (or National) so it was just 2 more local tournaments to finish the season. Or so I thought.

At the beginning of summer her school team was asked if they would like to participate in the World tournament with another local school. The other school's team qualified for World, but didn't have enough archers to make a team to take to Orlando. So a handful of archers from Kayla's school, including Kayla, participated with this other school at the World tournament.

And Kayla? She knocked this tournament out of the ballpark! I'm talking about her own personal best. She didn't place even top 50 percent...but that's not what matters. What matters is doing her best and trying to improve on her score, and maybe her ranking, each time.

So remember Regional? Her high score of 113? She blew by that score.

She scored a 151!! 151 people! This is from someone who scored 36 on her first tournament and 6 tournaments later she had a 151! To say I was shocked at 151 is an understatement - I was hoping for maybe in the 120s, but not expecting 151. She also wasn't dead last in the ranking categories either. 21 girls finished below her for over all girls, 3 below her for all 7th grade girls, and 5 below her for middle school girls.

She received her first sports letter and pin for archery :)
 This was taken last week while she was at Camp Victory Junction - I love this shot of her!

A quick shot while practicing at home:

 I'm glad this has been such a positive experience and I'm so glad she had this opportunity to participate; I can't wait for the upcoming season!

Tuesday, July 18, 2017

The Twelve Mile Bike Ride

I've been chronicling Kayla's journey to becoming an independent bike rider and two years ago she finally started riding a bike.

The year following that we didn't do much bike riding out as a family, but Kayla would frequently ride her bike around the block and gained more confidence and independence. Finally we took a family bike ride was off of our street/block and through a different part of our development. It was about 2 miles and I don't know what took me so long to do that with Kayla. For some reason I kept thinking that although she was riding around our street, she still wasn't ready to venture beyond that. All went well and we did that multiple times last year.

Because we live in the South where it's warm pretty much year round, we found ourselves taking our bikes out to an actual bike/running/walking (paved) trail on Christmas Eve day when it was near 70 degrees. This was the first time we took our bikes out of development ... and one of the things I had been longing to do while waiting/hoping/wishing Kayla would learn to ride a bike.

We had no set goals or predetermined spot along the trail where we planned to stop and turn around. We just figured we would ride a bit until Kayla got tired and then turn around. This particular trail actually ends up at Kayla's school ... about 6 miles from where we started. We mentioned that to Kayla, not with the intention of biking out there, but just as a point of reference - Hey this goes to your school!


Well, that was all the motivation she needed and the goal was set: she wanted to bike to her school. Of course the context of six miles means nothing to her. She was on the Running Club at school last year and part of their run would take them on this trail, but no where near where we were starting, it was only out near the school and back. But since the trail looks similar most of the way through, Kayla kept thinking we were closer to her school by saying that's where they would run for Running Club.

Anyway, we made it out to her school and what I was afraid of happening did happen. She was done. There was no motivation to go back the six miles we just came to get back to our van. We just started pedaling to go back when it started, "My legs are tired." Not that I blamed her. I think we were too ambitious thinking we could do a 12.6 mile bike ride our first time out as a family. But we had no choice, we had to bike back the way we came.

Joe was able to distract her and make her forget about her tired legs and we were once again off. A few more complaints here and there, but overall she did great on the way back. Until that one time she decided to stop. She came to a dead stop with Joe biking right behind her. He was behind her because a couple was walking on the opposite side of the path. He crashed into her bike with his handlebars going into her back. Of course there were tears, lots of tears. I worried about her getting back on her bike and just knew she wouldn't after that; yet we weren't quite close enough to our van for it to be a quick walk either. This was the moment of truth - would she quit after the crash and refuse to get back on? Or would she get back on that horse again?

Joe was able to calm her down and thankfully the tears dried up and she did it. She got back on her bike and we finally made it back to the van.

I was so proud of her for completing our first bike ride out on a trail, and just over 12 miles at that!

Saturday, July 15, 2017

Blueberry Eyes is Fourteen


Blueberry Eyes, the girl, not the blog, turns 14 years old today. How is that possible that this beautiful soul is now fourteen years old?!

She is still my spunky kid who relishes being onstage performing. She has no inhibitions about performing in front of people; not a shy bone in her body.

When she was born I didn't realize, at the time, how lucky I was to get to be her mom. How lucky I would be to watch her embrace life.

Happiest of birthdays to my now 14 year old!

Wednesday, July 12, 2017

The Summer of 2012

It has been five years since the summer of 2012.

For me that summer is mostly defined by my father's death. At the start of every summer since then I have to repress the melancholy feeling in the pit of my stomach at remembering everything that happened.

It actually started a month before - in May - when my dad called to say that he decided not to continue with any more chemo treatments as they just didn't seem to be doing anything.

A few weeks after that we were in Denmark - a trip that was probably planned a year in advance. While we were there I got word that my dad was in a bad place and no one knew what was going on or if he would still be with us when we got back from Denmark. Thankfully he was; he had some excruciating pain and finally was admitted to hospice but eventually went back home with a morphine drip and a nurse who would check in on him.

A few days after we got back from Denmark we were in Florida to visit with my dad. I will never forget as soon as I stepped out of the vehicle he grabbed me up in a big hug and started crying and said to me, "I thought I would never see you again." There was no way I could maintain my composure after that, even though I tried to keep it together.

The day after we arrived he developed a blood clot in his leg and was back in the hospice house. He said he wanted treatment so he was transferred to the hospital to try and get the right dosage of medicine and once that was under control he went back to the hospice house - and never did go back to his own house.

We went back home and then weekend before the 4th of July dad called while we were at the beach - during that phone call he broke down crying again and I knew I had to go back to Fl. The next day I packed the kids and myself up and we were off to spend his last 4th of July watching fireworks from the hospice house parking lot with my dad. It was his last good day.

We went home the next day and the day after that he took a turn for the worse and a few days later I found myself once again in Florida.

I was sitting in his room when he took his last breaths on July 12th. We celebrated Kayla's 9th birthday on July 15 amidst all that sadness. His funeral was on July 17th and the stress of it all kept coming. The day we were heading back home we realized Kayla's thumb needed medical attention - it was red and swollen. We went from urgent care to the ER to finally have it lanced and drained.

We were only home for another brief stay before we were packing again and off to DC for the Down syndrome convention. It was hard to be there, I hardly had time to catch my breath and grieve, but I also needed to be there for the distraction.

So it was the summer of a lot of traveling and consumed by the uncertainty of how much time my father had left, until his death. So every summer I'm reminded of what I was doing that summer of 2012.

It's only been five years, but it feels like it's already been a life time because of everything that he's missed out on:

- Lucas starting school (he was only 4 when my dad died and I don't think he has much of a memory of him
- Kayla becoming a teenager and starting middle school
- Me hitting my 40s
- Joe's retirement from the Air Force
- Lucas' first 10k
- New hobbies for the kids: archery, chess, geocaching, metal detecting
 - The birth of a grandson
- Grandkids starting, and graduating from, high school
- Grandkids getting their driver's licenses
- Military promotions for my brother and his wife
- Championships for the Red Sox & Patriots

Life goes on. I sure wish he was still here watching life go on.

A few days ago we were driving home in a thunderstorm which was putting Kayla on edge. She hates thunder and lightning and was getting herself all worked up about it. Sweet Caroline came on the radio. The kids had just been exposed to the experience of Sweet Caroline at the ballpark a week before so I was able to remind her about that and it distracted her from the thunderstorm as we sang along. We rarely hear Sweet Caroline on the radio - I told Kayla that was Pepere sending her the song to help her during the thunderstorm.

Thanks Dad, for still watching out for us.

Monday, June 05, 2017

Better Late Than Never

Last Memorial Day, not the one that just passed, but the one in 2016, Kayla had a dance recital. That's how behind this post is - a whole year!

She did great with her recital the previous year - Coppeli - and I couldn't wait to see her shine again, and she didn't disappoint.

I didn't take any pictures of her dancing like I did before (it's easier to enjoy and actually watch her dance without concentrating on getting pictures). I did take a few before/after photos though - and her costume was so beautiful on her last year!



After her recital I posted this on Facebook:

"Proud mom tonight! Kayla may not be the most graceful dancer, she may be a step behind, or a beat ahead ... but she gives her all and she dances with joy. She dances with so much joy it radiates off her face.

At intermission someone came up to us to tell Kayla how well she did and that she told her husband that she just loves watching her dance because she smiles no matter what. The final dance production was a father-daughter dance and she had the best time. After the dance a lady came over to me and said that Kayla was her favorite of all the dancers during the father-daughter dance and it was such a joy to watch her dance.

Another lady came up to Kayla and asked if she could shake her hand - and said how great it was to watch her dance with such a big smile on her face the whole time.

On the way out a couple other people topped to say how precious she was dancing with her dad and how much they enjoyed watcher her dance because of how much fun she was having."


I had to keep my emotions (tears) in check because I know Kayla wasn't the best dancer - with her form or mechanics - but that's not what they noticed. They noticed her effort, her joy, and how much fun she was having just being up on stage dancing.



My mother-in-law took a couple of videos, but I don't know how to post them directly on my blog. She uploaded them directly to FB so I don't have a youtube link or anything to imbed on my blog and don't know how to get a video off FB. They videos are public, but I imagine you'd still need a FB account to view them.

Anyway, here they are:

First video of father-daughter dance

Second video of father-daughter dance

We took a break from dance classes this year, but yesterday we were reading one of the American Girl stories and the character takes ballet and Kayla said, "I like ballet best." I asked her if she missed going to ballet and wanted to take classes again. She said yes, but made it clear it was to happen AFTER camp - nothing stands in the way of her summer sleep-away camp!

Guess we will get back in to the dance routine after summer!

Wednesday, April 12, 2017

He "Got Over It"

Earlier this year Lucas told Joe that he wanted to run in the Cooper River Bridge Run - a 10K race that Joe ran a few years ago. So Joe registered them both and they trained when they were able.

A tag line of this run is "Get Over It" - ie getting over this bridge.

The only other race Lucas has participated in was a couple years ago when a friend organized a 3.21 Run/Walk for World Down Syndrome Day. I was surprised that day when he ran the whole thing as we anticipated he would run for a small part of it and then walk the rest of the way - but he hung with the race organizer and ran the whole distance.

I wasn't sure how his first 10K was going to go, but he was determined to do this race.

I needn't have worried.

Lucas conquered his first 10K. He finished 3rd in his age group of 82. Out of 32,623 participants, he finished 2980 overall. His time was 52:34 with a pace of 8:27/a mile.

He also finished 1:05 ahead of his dad. Bragging rights, right there!

Right after the race Lucas said he wanted to do it again next year.

He's following in Joe's running footsteps, not just by running races, but also running and fundraising as a representative for LuMind Down Syndrome Research. He raised almost $700 for LuMind. So proud of this kid!

Finding his and Joe's names at the expo

Ready to run

Finished!

Red and tired faces

The 3rd place finish medal he received

His exciting day didn't end with the race. That afternoon he scored a goal in his soccer game; which his team won and finished their season undefeated.

His day ended at the playground ... where he found $5.

A great day indeed!
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Friday, March 31, 2017

She's Thirteen, Not Three

This past Christmas I was at a crossroads with Santa. I also felt myself in a conundrum with wanting Lucas to believe for another year, but wanting to tell Kayla the truth. Lucas was highly skeptical so I knew it wouldn't last much longer. I blogged about him coming to terms with it, and wanted to include what I was going through with Kayla, but that blog post was already long enough.

Kayla is thirteen and in the 7th grade and hasn't questioned the story of Santa. She took the story at face value - Santa brings gifts and that was that. I don't remember when I found out the truth, or how old I was. I'm sure I didn't still believe when I was thirteen and I doubt Kayla's classmates still believe.

So one day, several weeks before Christmas, Kayla was talking about Santa and I just casually said, "Kayla, Santa's not real, ok?"

Kayla, "Santa is real."

Me, "Well you know all the Santas that you see at parties or parades? Those aren't real Santas, they are just people dressed up in costumes."
She replied back, "He's real at Christmas you know." I had to laugh at that.

The next time we talked about it she said, "Santa's fake" and I confirmed, yes, Santa is fake. He's not real. I wasn't sure if she really understood what I was saying or if she was only referring to the Santa at the Christmas parties.

Then there was the time Lucas was asking about Santa, again, and Kayla yelled out, "Santa's fake! Right mom?" oops!

Up until Christmas she seemed to just accept the "Santa's fake" line, but on Christmas Eve and Christmas Day she was back to insisting that Santa was real.

There is a certain kind of magical element to Christmas when you have young kids who believe in Santa, and it's fun to see their surprise and wonderment at receiving gifts they asked Santa for, but as kids grow up that belief eventually fades away and I'm not interested in keeping Kayla in a 'younger' mindset.

I'm not going to continue that ruse with Kayla just because she has Down syndrome.

I want Kayla to be taken seriously by her peers, potential employers, and by her community. If she is 25 years old and still believes in Santa, will they take her seriously? Will they presume her competent? Or will they think she is less capable? Will they continue to treat her younger than she is? I am not going to play along, or encourage my adult child, to believe in Santa.

I'm not saying there is a right or wrong way on how to handle this, only this is how I feel and plan to parent my child.

People already have a tendency to treat her younger than she is.

How many parents have a typical 13 year old daughter who, when leaving a medical office, are offered a sticker?

How many parents have a typical 13 year old daughter who, when left in the exam room the nurse, or assistant, asks, "Would she like to watch Peppa Pig?"

No, she is not going to watch Peppa Pig - she's thirteen, not three. I realize she might not look like she's thirteen, but she's obviously not a toddler.

Yes plenty of older children/younger teens watch cartoons, but there is a difference between cartoons and preschool programming.

Yes I had a sticker book, two actually, when I was a kid. I still had those books when I was thirteen. I don't think I was still collecting/trading stickers at that age though - or if I was it was not on a regular basis and it wasn't with stickers from doctor's offices (which are, usually, more of the preschool character variety.)

Kayla is going to believe what she believes and I can't change it, or force her to not believe in Santa, but I won't encourage it and I won't continue to tell her Santa is real.

Tuesday, March 21, 2017

Not Special Needs and His First 10K

Today is World Down Syndrome Day - March 21st because people with Down syndrome have 3 copies of their 21st chromosome.

The past few years the CoorDown organization from Italy has produced some great PSAs for WDSD, and the one for this year doesn't disappoint.

It's about describing people with disabilities as having "special needs" - and although I have, and do, use that description, I haven't always felt comfortable with it. There's a nagging feeling in the back of my head when I say "special needs" ... which I blogged about 5 years ago in "That Word Special."

I was glad to see CoorDown put a video out that mirrors my thoughts: Not Special Needs, Human Needs. Kayla doesn't have special needs - she has human needs.



And another note on World Down Syndrome Day - as in years past, all donations made today to LuMind RDS will be matched 3:1. How great is that? A $25 donation will be matched with $75 turning that donation into $100.

In more news - Lucas is following in Joe's running shoes. He's running his first 10K in the Cooper River Bridge Run on April 1st. And just like Joe, Lucas is representing LuMind and raising money for Down syndrome research. If you're able to support him in reaching his goal he would really appreciate it! Any donation made today through his Crowdrise page will also be matched 3:1 as the donation goes to LuMind. Thanks for any support!
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