Blogging about life and raising our five kids with Down syndrome while battling Breast Cancer.

Be the kind of woman that when your feet hit the floor in the morning the devil says, "Oh shit! She's up!"

Wednesday, October 01, 2014

Awareness Month: Down syndrome

My previous post was about breast cancer awareness. I am reminded of the existence of breast cancer every day. I try, though not always successfully, to not let breast cancer rule my life. Because every morning I look around the breakfast table at 5 sets of eyes who greet me with smiles no matter how crappy I feel due to my treatments. Every morning I get a hug from each of these 5 kids. We go through our morning routine, I give them a hug and send them off to school just like I have been doing with my kids for 28 years now.

I often have to remind myself these kids have Down syndrome. 

The eyes of my kids are captivating. They each hold a story with details I will never know 100%. I cannot know what it is like to have Down syndrome.  I DO know that every day my kids' lives are filled with the same experiences as their same-age peers. They have friends, they have spats with friends, they have a love/hate relationship with their siblings, they have foods they like or dislike. They live life to the fullest just like every child their age.

Our kids with Down syndrome are just as amazing as our other kids.


Awareness month: Breast cancer

It is October 2014. It is Down syndrome awareness month and it is also Breast Cancer Awareness month. Where do I start????

Lets start with Breast cancer this year, shall we? We all know that breast cancer exists! Every month is breast cancer awareness month. Ever day when I look in the mirror, or take a shower, or glance down, I am reminded how breast cancer has affected not only me, but my entire family. There is no escaping it. But, that doesn't mean I buy into pink.  Some yes, some no. Yes, the pink ribbon has become the symbol for breast cancer, but before you get involved in activities and events promoted by various breast cancer organizations, check out their stats. What percentage of their money raised is actually given to the support of people with breast cancer, or to research for a cure for breast cancer?  How much of the money raised goes into overhead? Just because they have a big name does not make them a good place to put your money. Pink has become a great marketing tool for many organizations and businesses. People think if it's pink, they must be doing good things with that money. Not necessarily true! Do your research, ok? We don't need awareness events, we need research. We don't need "feel good" events, we need research.

Did you know that the survival rate of breast cancer has NOT CHANGED in 20 years???? If the research was being done, this statistic would no longer be true.

 Did you know there are 14 different types of breast cancer?

Did you know that "early detection" of breast cancer is a bit deceiving? Most breast cancers have been there months -or in my case years - before they are actually diagnosed.

Did you know that 76% of women who develop breast cancer have absolutely NO risk factors? All women are at risk!

11% of women diagnosed with breast cancer said pain was symptom. I am one of them. In fact, it was my first symptom. It is pain that lead me to find my lump.

There are approximately 232,670 new cases of breast cancer in women are diagnosed in the US every year, and 2,360 cases of breast cancer in men. Approximately 40,000 women and 430 men in the US die from breast cancer every year. 

While mammograms are helpful in diagnosing breast cancer, the most important thing you can do is know your breasts! Know how they feel and how they look so you are aware of changes when and if they occur. 

Monday, September 29, 2014

The Day of Surgery

A new reader asked if I would write about the day of surgery and how everything went. Its not all positive, but I will write it anyway. ;-)

The morning of surgery was a carefully orchestrated chain of events that had to start days in advance. My son Tyler often helps us with the kids if I have doctor appointments or we have scheduling conflicts that don't allow us to make it home in time for the kids' buses. Tyler arrived a couple days before my surgery so I could get to the last appointments before surgery. Then, the morning of, Dean and I got some of the kids on the bus and Tyler got the little boys on their bus, then he spent the day with Audrey. We SO appreciate all of the help Tyler has been to us the last few months! I honestly do not know what we would have done without him. (not to forget others who have also helped out with kid care!)

Dean and I arrived at the hospital at exactly 8:00 a.m. We got inside and I realized I'd forgotten some paperwork in the van so Dean was nice enough to run back and get it. This is a hospital we had never been to before and were't sure where we were going. We finally found our way to the admissions area it was still only 8:05. We sat down at the little interview desk as they had me sign consent forms, and verify what procedure I was having done. I choked. I had a really tough time saying, "bilateral mastectomy". But I didn't cry, even though I wanted to.

Next we were brought back to a holding area. Dean decided he needed to go to the bathroom and I knew they would call my name the minute he left, and that is exactly what happened. I couldn't take anything back to the pre-op area with me so the nurse and I waited Dean to come back and grab all the stuff. The nurse looked a bit annoyed with me. Bummer for her!

I was brought back to a pre-op cubical where I undressed and put on the cool BEARgown (that blows hot air on you) and booties. Then they hooked up the hugger leg things too. (I want a pair of those at home!) Of course, as soon as I was hooked up to all that stuff I had to pee! Then, oddly, there was a call from my plastic surgeon. There had been some discussion whether or not the nipple on my cancer side was able to be saved. "I've was thinking about you all night. Tell Dr. S. I suggest using the old incision from the lumpectomy on that side and that nipple should be fine." I got back in the bed and turned the BEAR gown to blow cold because I was having hot flashes like crazy.

Finally Dean was allowed to come back. Then Dr. S, my breast surgeon, arrived and did some markings. Those were added to the markings the plastic surgeon had made the day before. He made a quick phone call to the plastic surgeon to verify what she'd told me. Meanwhile, I was now cold so turned my BEAR gown back to very warm.

About this time I was starting to feel a bit panicky. I start talking a lot, cracking really stupid jokes. "Want to shut me up? Give me drugs and you won't have to listen to me anymore." This, as I turned the gown back to COLD.

Around this time is when the lab people showed up because my bloodwork from the day before hadn't arrived and they needed to make sure I wouldn't need a transfusion due to low counts. I asked them to use my port to do the draw but they needed a separate vein. And that, my friends, is where a small problem appeared! You see, the DAY I was told I have cancer, my veins rolled themselves up and took off to Timbuktu! Just weeks before that I had been really easy, but now it is nearly impossible to get a blood draw on me. I let the lab tech try ONE time.

As she was slapping my arm to find the vein I said, "10!"

"Ten what?" she asked?

"My pain level is at 10 now. I need drugs."  I let her poke me one time and she didn't have any luck. "That's it. No more. Give me some drugs through my port and then you guys can do whatever you want to me."

BEAR gown back to warm.

Next the anesthesiology guys came in. I looked at them and grinned. "10. I'm at 10. You should give me something now." Dean begged them to hurry up just so I would shut up.

Although they couldn't use the port for surgery because it would be in the surgical field, they agreed to give me drugs through my port and find a vein later.  As we were discussing what they were going to give me ..."Diliauded? Do you have that? I really LOVE that stuff!" I felt it hit me. I looked over at Dean, "Oh sweet God there it is! Tell them I need that stuff for at home."

I lost a few minutes and then they were wheeling me to the operating room. It was VERY crowded with equipment. Hardly enough room for actual people, much less a whole surgery!  "Um, are you sure this is the OR? It looks like an OR storage area." One masked person commented, "Its ok, you won't remember it."

"Yes…yes I will, because it is weird. It is really weird like something you would see in a movie. Maybe there is some creepy conspiracy going on. You should just put a mask on me quick…."

And that, my friends, is the last thing I remember. They were done listening to me.

Surgery lasted 6 1/2 hours.

The next thing I remember is being moved. Oh sweet mother of GOD my body was on FIRE. I felt like I was in a cocoon and they lifted me up in that. "Please don't. Please don't touch me. Omg…OMG this hurts so bad! Do NOT touch me! Why do I hurt so much?" I could hear Dean's voice somewhere that seemed far away but I knew he was right there. We were in my room and they were moving me from the gurney onto my bed. Someone had put my arms over my chest and I couldn't move them from that position. "I can't move my arms. At ALL. Please someone move my arms."

Somewhere in there the nurse informed me (or Dean and I only overheard?) that my drugs had not yet arrived on the floor? WHAT??? How could they not have my drugs ready? Oh I was in so much pain. I hurt so bad. My chest was on fire and I couldn't stop sobbing, and shivering,  which caused everything to hurt even more. I am told I said some bad words. It is entirely possible I did. Someone moved my arms to a better position with pillows under them. But I could not move. Not even an inch, without searing pain.

And then I was out. My drugs must have arrived and they knocked me out.

Poor Dean. It must have been awful to see me like that.

I don't know how long I slept, but I do know the next time I woke up I wasn't in so much pain but the nurse shot me up again right away. I was awake enough to talk to Dean a few minutes. I sent him home because I was worried about how things were going there and I knew I would just sleep for several hours. No need to stare at me sleeping and I knew he had to be exhausted.

I slept most of the night, awaked every two hours when they gave me another shot, checked my drains and vitals. On Saturday Dean brought Angela and Axel up to visit for a little bit. I was able to get out of bed by then and sat upright in a chair since the hospital bed was already killing my back. By then I was on oral medication and for the most part it kept my pain under control. The nurses got behind once but believe me, I watched the clock closely because the last 30 minutes or so were always miserable. If they reached the "5 minutes late" mark I was pushing the call button.

The second night in that hospital bed I thought I was going to die because of my back. I couldn't sleep and getting into a comfortable position was impossible since there is no way to move after this surgery. There is but one way to sleep, and that is on your back, semi sitting with your arms propped up and pillows under your knees. I could have begged for one more day in the hospital but the thought of another night in that bed was enough to get me home instead. 

Thursday, September 25, 2014

Post Op Recovery Continued

Yesterday I called my plastic surgeons office to say, "Hey! I am out of drugs and I am  not ready to be out of drugs." I was still in a lot of pain and really just in a really bad place. I was in tears all the time and could feel myself sinking into depression. No….no I think I was already there.

My plastic surgeon wanted to see me as soon as I could get in. Her first words, "You don't look well, and certainly are not yourself. What is going on?"

We went over everything, and here are her conclusions about what could be going on:

1) In my previous post I mentioned the breast surgeon who did my mastectomy wasn't able to leave enough tissue on the sides to cover the tissue expander so they had to use the alloderm. It could be I'm having a reaction to that, which slows healing. This is usually temporary but does involve more swelling (and the pain that goes with it) than if it hadn't been used.

2) Sometimes it doesn't work to save the nipples. The one on my cancer side looks great (well, this is a relative term because it looks like the shriveled end of a lemon right now) and the color is good. But the nipple on my cancer-free side doesn't look the same. Parts of it are black (black! It is pure  nastiness)  and there is a lot of swelling behind it. The Plastic surgeon wasn't concerned about the color as much as the swelling. More tissue is needed behind the  nipple to keep it alive, and sometimes that tissue becomes full of edema. It is a very good possibility when I go back next week she'll decide I need to have another surgery to remove the nipples. I'm ok with that. I tried. I just want to not be in pain.

3) I have, in her words, "extremely well developed pectoral muscles" and am told it took quite a bit of force to create the pocket to place the tissue expander behind those muscles. Once the expanders are placed they are supposed to be filled a little bit. My doctor wasn't able to put as much saline into them as she normally would because it was just too tight. It could be my body is just not happy with that assault and just needs more time to adjust.

4) I just finished chemo. Although my last treatment was two months ago it takes a lot out of your body and makes healing go differently than expected.

5) Everyone reacts to surgery differently. Although I've done fine with previous surgeries, this one is pure hell.

She changed my drugs around a little bit and I'll go back to see  her on Weds next week. Hopefully both my drains can come out that day. If there is one thing that drives me crazy, its these damn drains! 

Wednesday, September 24, 2014

Day 13 post Bilateral Mastectomy

Disclaimer: Please remember that my cancer related posts aren't just for my regular readers, but for those searching for information because they or a loved one have been diagnosed. My posts are very honest, and I don't believe in leaving out details that someone may find helpful. So, if you're squeamish, or can't handle me talking about what used to be very private parts of my body, then you should hit that little x in the corner now.

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So, my bilateral mastectomy was done 13 days ago. 13 very very long days. First, let me describe what was done so my later explanations will make more sense. 

1) On my cancer side the breast surgeon went in through my old incision (from lumpectomy back in April) to remove all the breast tissue, which he compared to building a ship in a bottle. If you're not familiar with breast anatomy, that tissue goes back under the arm as well as up the chest wall a bit. Because he was able to use the old incision he didn't have to do any cutting on the nipple itself. 

2) On my non-cancer side a standard incision was made. That runs from the side of my breast from the armpit to the nipple, then around the nipple edge. During the entire procedure of removing breast tissue it is looked at under carefully to make sure no cancer is found. 

3) the plastic surgeon then stepped in and did her work. She placed tissue expanders behind the pectoral muscle that will be slowly filled over the next couple of months and later replaced with implants. Unfortunately the breast surgeon wasn't able to leave enough tissue at the sides of my breasts to cover the tissue expanders. Because of this Alloderm was used to rebuild those areas. 

4) a drain is placed in each breast which allows fluids to drain off. Each drain must be producing less than 35cc in 24 hours before it can be removed.

My surgery was on Friday, Sept 12 and I came home on Sunday. I was moving pretty well, better than usual for that stage after surgery. And it all went downhill from there. 

I was doing ok until about the one week mark when my pain level went crazy. I was at a "10" several times over a 24 hour period. When I was able to talk with my doctor she made an immediate change in my pain meds which was a huge relief. 

Still, coming to the 10 day mark I knew I was not where I should be, and actually felt like I had gone backward a bit. My range of motion was diminishing and I could feel lots of cording starting in several places under my arms. Anyway, a couple days ago I started cutting my drugs in half and moving to over the counter drugs. Plus, one night in the wee hours it occurred to me the muscle relaxers I was taking are evil and I decided to break up with them. 

And here, I am, day 13 with "issues". Like, I'm still in a  lot of pain. FAR more than I should be at this stage. I should be moving pretty much normally but I very much am not. My drain output is still high for this stage. I will say, I have had another very difficult surgery done 5 years ago by this same plastic surgeon and I knew what to expect. This is beyond that. Today I went back to the doctor….

Thursday, September 11, 2014

The Next Phase

The last few months have been so crazy. I went from being a "new" parent to a cancer patient in just the blink of an eye. I learned about breasts and breast cancer. I learned about vulnerability.

I walked past store windows and was startled by my reflection. One day I was in the bathroom with one of the kids when I turned and jumped when I saw a man standing behind me…only it was my own reflection in the mirror. I learned to recognized this new image. I learned to be comfortable without hair. I gained a tiny bit more confidence and could empathize more with my kids who get stared at often.

I learned to make decisions based on what I know today, but that the information I have tomorrow may change the decision. I learned to stop second guessing myself. I learned to trust my decisions no matter how difficult they may be.

I've learned to accept help, which was possibly the most difficult lesson in this whole journey. I've learned I have TRUE friends all over the country... all over the world, and that I needn't have met them for them to make it into that category.

I have NOT learned to be comfortable with the word "cancer". I still have trouble saying, "I have/had breast cancer." Those words aren't for me. When a situation arises that I must utter the phrase my knees become weak and my stomach lurches. It doesn't matter who I'm talking to, how well I know them, or if they are a complete stranger,  I will almost always find a tear running down my cheek. I'm not usually a crier, but now I cry every day. Every.single.day.

I have survived diagnosis.
I have survived humiliating examinations.
I have survived treatment.
I have survived discussing my breasts and nipples as if they were my big toe.

My spiritual self is intact. Perhaps its a bit stronger in some areas and weaker in others, but my physical self? It needs some work. Not just my breasts, but my entire body. Right now it is time to work on the breasts. I am stunned…I feel as if I'm walking in a dream…I can't believe this is what is ahead of me. I try to remind myself that, like childbirth, thousands of women go through this every day. I can do it. I will be fine. Still I must go through the motions of making sure Dean has all the information and documents he needs "just in case".

There is a lot of work ahead of me. Ahead of us. This is a four month process and then I must work on the other parts of my physical self. The overweight parts. The "not working as well as they should" parts. The parts that need to carry me another 40 years.

Tomorrow is the day I start.

I am ready. 

Friday, September 05, 2014

One week

In one week part of my life will change.

In one week my body will change.

One week.

In one week I will have my breasts removed.


I don't have a lot to say to anyone lately. I really would like to completely disconnect from the world and play hermit.


Thursday, September 04, 2014

Conversing!

We are loving watching the communication that is happening here with the kids. Asher and Abel's sign vocabulary is growing by leaps and bounds! Both have 1:1 support staff in school who are fluent in ASL, plus we sign at home as well. (I'm a former ASL interpreter.) Here's a conversation we watched the boys have this morning. SO FUN, especially when you think of the fact 18 months ago Abel had zero ability to communicate in English or Serbian, and Asher had no ability 2 1/2 years ago.

The scene: Asher and Abel are waiting outside on the front step for Dad to bring them to the bus. Dad gets something out of the car, locks the door and goes into the house.

Abel pointing at car door handle: "Papa opened the car."
Asher: "Papa's car"
Abel: "You open it." 
Asher: "Papa's car. Yes."
Abel, touching the handle: "Open it."
Mom (from the house) "Abel don't touch."
Abel: "Mom said no. Don't touch. Open it."
Asher: "Mom said no."

Airplane flies over. Abel looks at the sky: "There's an airplane. Up there." (takes Asher's chin and makes him look at the sky.) "You do it. Airplane." 
Asher: Airplane
Abel: "Eating is done. I need to go to the bathroom." 
Asher: "Bathroom." (points to the house."
Abel: "Mom! I need to go to the bathroom!" 

Wednesday, September 03, 2014

Power Cafe!

Remember back in June when Angela turned 18? Do you know what comes with turning 18? Me panicking about Angela getting a job. I have a few friends in the DS community who have solved the problem not only for their own child, but they have opened businesses to employ others who have disabilities as well.

My friend Galit is a long-time reader here at The Garden. She lives in the Boston area and has started the MOST awesome project!!!



The Power Cafe is a coffee shop, but not just any coffee shop! The Power cafe will be staffed entirely by people with physical and/or developmental disabilities! Galit has started an Indiegogo campaign. Please go have a look and, if you're able, help support this venue that will be so beneficial to the disability community of Boston!

Tuesday, September 02, 2014

Back to School 2014

 It's time for our annual "Back to School" picture!!!

Here all the pictures through the years. Scroll through the pics and see for yourself.


2008

2009

2010

2011

2012

2013

2014

Sunday, August 31, 2014

These Eyes

These eyes


What did they see?

In their life before a family, I don't doubt they saw terrible things.


These eyes



Did they fear that one person who came to him each day?

Did he look on in hunger as the food was taken away?


These eyes


Did they wonder where the people went?

Did they worry for the child who cried next to him?


These eyes


What do they know? 

What memories do they hold?


Sometimes I am thankful they cannot tell me. 

Wednesday, August 27, 2014

Henna Tattoo Crown

Dean and I went to the Minnesota State Fair tonight. A great date night that he and I look forward to every year. We got a bit sidetracked by the henna tattoo both. I've been wanting to do a henna crown for awhile now. This is my last chance since my hair is starting to grow back. I love it! The henna work was done by Shana at Redfox Henna











Tuesday, August 26, 2014

Saturday, August 23, 2014

Summer Bucket List

I think Dean and I need a bucket list for next summer to make up for the things we didn't do with the kids this summer.

Normally I do one fun outing during the week with the kids. A trip to the zoo or some community event. Then on the weekend we do one family outing. This summer? This was "The Summer that Mommy Laid on the Couch."

We did exactly four fun things. No wonder my kids want to go back to school so bad. Its not just about keeping kids busy (though that is a lot of it) it is also about showing the world to our new kids.

Do you know Audrey doesn't remember me with hair? I  show her pictures of me with hair and she doesn't know who it is. That makes me sad. She'll get over it, I know, and so will I. At the moment it makes me a little bit sad.

So, I'm off to work on the bucket list for next summer. Some weekend road trips. Some local attractions that all kids should see. Living, that's what we'll be doing. Living.


Scars

I've been quiet lately. I have all kinds of things to say, I just don't know how to say them or where to start. I'm at a loss for words.

On September 12th I'll be having a bilateral mastectomy with immediate reconstruction. I wish there were a way to know what the end result will be. There is no way to predict how I will heal. Breast cancer stays with you. Forever.

Please watch this video. Breast cancer is not a pink ribbon. Breast cancer is about survival. It is also about the 39,620 men and women per year in the US who don't survive. ( http://www.breastcancer.org/symptoms/understand_bc/statistics ) If breast cancer stayed in the breast people wouldn't be dying from it.




Wednesday, August 13, 2014

On the Path

I didn't see it coming.
I was blissfully unaware,
living my life
as if it wasn't possible.

There was no warning.
That unexpected turn in our path
causing me to lose myself
as I tripped on the unknowns.

It is hard to fall gracefully,
all willy nilly and out of control,
trying to right oneself
while looking eternity in the eye.

The battle to regain composure
hands at the ready
to grab hold
of anything that looks stable.

Finally steady
Brushing off the dust
a cleansing breath
standing tall and continuing on.







Saturday, August 09, 2014

Asher's love of water

The first day I met Asher he was given a "bath" in the sink of his room in the institution. Its kind of like a farm sink at counter height. You can kind of see it here in this picture of Abel in the same institution. (At 10 years old Abel was still in diapers and this is the diaper changing station. A couple weeks home and he was out of diapers. )


When the children in Asher's group were given a "bath" they were made to stand in the sink while they were hosed off with the sprayer. I watched him desperately try to put his hands in the water only to have them swatted away, as if he was a naughty little boy for touching the water. My heart broke for him. He just wanted to touch the water. I had no idea how badly. 

For many adoptive parents getting custody of their child is synonymous with the "first bath". It means an opportunity to get rid of the institutional stench that emanates from the child's every pore. (It actually takes weeks to get rid of that smell.) For some newly adopted children this first bath is an extremely traumatic experience. Not only are they in a new environment , but they may have never experienced sitting in water before.  This is Asher's first bath. No trauma, but a big smile about half way through. So happy he can touch the water! (I would not normally post bath videos. You only see his back in this one, except for a few seconds. Originally this video was made so his dad at home could share in the first bath experience.) 

From that first bath until today Asher has been obsessed with water. I don't know if the word "obsessed" even comes close to describing his fascination. In the summer, if its nice outside I need only to turn the hose to a trickle and it will keep him busy for hours.  Sometimes with the hose he will put it right to his ear, letting that ice cold water shoot into his ear. 





















Back in Time

I was having trouble uploading videos to youtube tonight. While I was waiting for things to process I was looking at some old videos of Angela. This is one of my favorites. She was 11 at the time. I love listening to her little voice.




Saturday, August 02, 2014

A Little bit of Audrey

Audrey has been home 4 1/2 months now. Last week we put up a small pool. Yesterday she was scared to death of it. Today she watched Asher and Abel splash around and decided she wanted in!


Audrey LOVES music and will do almost anything if you put it to music. She is imitating more and more. It is so fun to see her coming out of her shell! Her understanding of English is increasing daily. She follows directions really well. Sometimes one of the boys don't understand a direction so she will do it for them! Please excuse my annoying singing in this video! (the boys in the pool to the side make it look really deep. Its only waist deep on them. They LOVE it!)




Friday, August 01, 2014

Life in the Garden

I found Angela and Dudley laying on the floor.


Me: Angela, what are you doing?

Angela: Resisting arrest!

We may have trouble on hour hands in the future.
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Some of the kids are done with summer school, some are half way done and others are just starting, This is because I don't have enough trouble remembering the daily schedule from one day to the next. 

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Axel was walking to the bus stop last week. 

Dean: "Bye Axel! Have a great day! Love you buddy!"

Axel: "Bye Dad. Peace out!"
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My friend Mary brought over a lego table her kids had outgrown. Axel is in heaven. He builds everything as symmetrical as he possible can.


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When Abel is done with therapy, if he didn't have any problems, he gets to spin a plate. Not an activity everyone would choose, but its his favorite activity and that's what's important! He is a master plate spinner. Lot of kids at the therapy center are trying to figure out what's so neat about this plate spinning thing and are now trying to compete with him. Here's a really short video. He hadn't quite yet gotten "into" it. In other words, I could still talk to him. Another minute and he is 100% engrossed and the plate spins for several seconds at a time. If you're familiar with the sport of Curling, he brushes the table similar to the way curlers brush the ice with their brooms. 

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My son Tyler has been helping us a lot this summer. I don't know what we would have done without him! He loves to do Audrey's hair. It is almost long enough to get into one ponytail. 

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Asher is spending his summer playing with or in water.