Day Seven, coming in a bit late.

The Funny Thing About Paint.

I grew up in a many places, we always had a roof over our head even in the roughest of times, and sometimes it was a roof that moved, but when it rained we didn’t get wet.  That was the important part, we were always safe.  And warm enough, blazing hot summers and cold winters…always warm.  ;-)  AC was for the rich and privileged.  But always, always, we had white walls, or maybe I would be more accurate to say we had eggshell colored walls.  As I kid I found this fascinating, the idea of ever wanting the color of an eggshell.  I’ve seen a few eggs in my life and I frankly couldn’t distinguish between eggshell and white.  Good grief.  But my dad didn’t like to paint, and if he did have to paint it was always eggshell. 

When Eric and I got together we went from rentals to Navy housing, back to rentals and there was a roof over our heads and in two particular apartments there was even AC to combat the oppressive Japanese summers.  We knew we were living in high quality then and didn’t take it for granted. We were cool in summer and warm in winter.  And through it all we were surrounded by white walls.  Always white. 

We briefly owned a house when we thought the Navy was going to leave us in one place till he retired…the first thing we did, and the only painting we did, was to each girl’s room.  Madison got a very pink room to tickle her heart, and Sydney got a beautiful purple room.  Standing back and looking, I have to admit that the purple room was quite lovely.  Each room had a darker shade accent wall, because apparently that was the thing to do…and then a shade or two lighter for the remaining walls.  In the shallow little well of memories that the very young possess, both my girls have vague but true memories of their rooms. 

We didn’t get to stay long and we were back in Navy housing with white walls…then rentals, and all had the white walls.  And when we finally got into a position we could buy another house, the first thing we did was take out the 60 foot nightmare of a Palm tree that swayed against the roof in the front of the house…then we started painting.  I started in my kitchen cabinets because they are very old and were in terrible shape and needed a lot of work.  And through it all, as I painted them out with white primer to buy us some time…I came to the end thinking…maybe white is not so bad after all…  Sadly, the rest of the house is anything BUT white.  It fact, it is mostly yellow…a whole lot of yellow in varying stages.  And it’s funny, even as you start to shy away from a property you tell yourself, look at the rooms not the color, paint can change it to what you want.  But painting is exhausting!  Yes, I can and will change all the color in the house to something more pleasing to my eye and hopefully, pleasing to Eric and the kids…but good God…where did all these walls come from?  I think the idea of “open concept” is a mere byproduct of people like me thinking: if I knock down that wall and that one that would be at least two walls I wouldn’t have to paint! 

And then you have the color choices!  Paralyzing in the magnitude!  And yes if you don’t like it you can change it…but did I mention that painting is exhausting?

But as it is, half the hall is done, and half the living room has been painted with primer.  We took a break in all the heat to not paint, and then we had a wall put up to turn a formal dining room we would never use into a fourth bedroom, complete with closet for Sydney…so we started painting again there so as soon as the electrical is done she can move on in.  Then we have to sand down some in the room they are sharing to then paint it with lots of pink for Madison.  Sydney wanted a teal like color and Madison wanted pink.  J  All I could think, please let them love it…I don’t want to be painting over it all again in six months, and yeah…I want them to love their new rooms too.  Totally, my first thought! 

Then there is Bradley’s room…what to do, what to do?  One wall is kind of ra oyal blue color that speaks to my KC Royals loving heart…but the others are more grey.  And it’s his room and I want to make it all his…so his room is last because I can’t seem to come up with a viable option for his room.  Do I want McQueen colors…ugh…maybe too dark.  How about Curious George, because he loves Curious George, so I thought browns and YELLOW!  Nooo!!!!  UGH!!!!  But with George wall appliqué’s and George yellow, not the dusty, kind of dirty yellow I see around me now.  Of course, he changes his preferences about as often as he changes clothes…so, well…now you can see why I might feel a bit shackled by his whimsy in choosing his room decoration.  So yeah, his room will come after the girls, but before the Master.  I don’t even know what kind of color ours is, something that might be a bit blue and a bit green, and something else….who knows.    I keep thinking of options in the back of my head, because choosing colors is the hardest part for me.  Cause yeah, I can always repaint…but the funny thing about paint…it is a lot of work to do it. 

But here are the best parts.  Watching Sydney going to town painting her room, awesome.  Watching Bradley mimic our movements with his own paint brush…so very cool!  And seeing two girls that fight a lot coming together to work this kind of project for each other and for the family, nice!  Seeing their eyes light up as they see the colors they were allowed to choose to make their rooms awesome and all theirs, is quite literally the best part!  The walls may not come out perfect, especially with a brush in Bradley’s hand, but it’s our house now, our walls and the journey of our family.  Our life is not perfect.  There is no one in our family that is perfect.  And yet in many ways, our imperfections are giving us the perfect life for us.  With a little paint here and there, little flaws can be corrected.  And with a little extra work and extra love here and there, little mistakes can be corrected and lessons can be learned.   Who knew the life lessons that would come shining through with a little bit of paint and hard work.  Yeah, it’s exhausting, but a life well lived is exhausting in itself, but oh so worth it. 

The Cream in the Cookie

Day 6: Blogging to bring Awareness and Acceptance of Down Syndrome in the 31 for 21 Challenge.

So Bradley has these two sisters.  I may have mentioned them before.  One tries to mother him which he likes to an extent but then he gets tired of that really quick.  She is also his partner in all things loud and crazy, they are rough and tumble with each other and both are addicted to electronics, in many ways a match made in heaven.  But hers is a story I will share another day.  Today I am delving into that middle sister, that cream in the middle of the oreo that holds this family together. 

At twelve years old, she has the world in the palm of her hands and doesn’t even realize it.  I was looking at her this morning and it occurred to me that had we met in Seventh grade, we might have been friends.  She would have been pulled to me because I was a loner and extremely shy, she would have attempted to befriend me to unlock the person inside I was afraid to share with the world.  I know this because of the way she talks about kids at school.  Like one of those beautiful flowers in the garden, my daughter stands still and the birds, the butterflies and the bees all come to flutter around her.  Somehow, she manages to juggle all the different personalities that are drawn to her, and mostly with great success.  She plays the French Horn with more than a little bit of talent, and she picked up the Violin this summer without trouble and has been progressing pretty quickly.  Too bad her mom has no idea how to help her re-string her A…  Ugh….  She’s been playing Volleyball for a few years now, and this year her School decided to add Girls Volleyball to their sports program.  Of the 12 roster team, only four have ever played before and only three can really play the game.  The others are new and just learning.  It has made for an interesting and difficult year.  Their first practice was the morning after their first loss.  It has been rushed and crazy, but the girls are happy to play.  Turns out, somehow mine is one of the three that can actually play, and the moment she clears the roadblock in her head about her serve and starts serving consistently, she might be almost as good as the only eighth grader.  But for today, her weakness is serving. 

When we moved back to the area, she made herself sick with worry about her first day of school.  But when she walked in the first day, a voice from behind her called her name, she turned and some of the boys that had been in her class in second and third grade came running and hugged her they were so happy to see her.  These are her core friends, they are the ones that are really smart, there’s one that has asthma and they bond over that, and then there are the ones that bond with her over band.  And honestly, to some, she makes band look cool and fun.  She doesn’t care if others don’t feel the same, for her it is fun and exciting, and cool.  And others see and respect that in her. 

She finds B’s an offense, and every missed serve a personal attack.  We have had to work very hard to learn that B’s are okay because the kind of stress meltdown we get from them is not.  I never  thought I would give my kid a lecture about accepting less than an A and being okay with it.  I thought it would be one of those, “You better work harder and bring that back up” lectures.   Um, nope, not this kid.  I was going to bow out of the state testing last spring, but both girls wanted to do them to be able to go to the school BBQ at the end, so for that reason alone, I let them.  My kid had to take the tests on a make-up session because she was home with a 103 fever and “Foot, Mouth Disease”.  She still almost scored perfect in Math and pretty close in English.  Good grief. 

Somehow, she’s become one of the popular kids, and I don’t mean that in the sense of all those obnoxious kids that I grew up avoiding.  She’s the kid others WANT to spend time with.  She’s THAT kid.  And believe it or not; that comes with a price, as she is constantly trying to turn off her brain from class and change gears to enjoy so many different freinds.  We spend a lot of time before school (and a lot after) talking about how to juggle, keeping her needs and happiness at the top but always managing to be kind to others.  My daughter has an underlying current…one of anxiety and perfectionism and these are tough to live with.  We work very hard to help her work through these…I guess we just work hard in this house.  But she is always listening and reviewing and calculating…putting things in their proper places and keeping perspective about most things unless it has something to do with her hair, or her nails…she may be a nerdy jock at heart, but she’s also all girl.  She loves to mess with her hair and her nails, which is fine by me…for plenty of years I was the guinea pig for both.  She’s really good at both now that she’s doing them for herself, I find that interesting in itself, cause she wasn’t always so good at either.  ;-) 

And underneath all of this is a heart of gold, a strength that she doesn’t even realize she has yet and a determination that she will make her way in this world on her terms.  She will do all of this and keep us laughing along the way.  Often a simple conversation with her can leave me laughing with tears running, she is just that funny.  I love it, I love her and I love all the magic that her being her brings to this world but mostly to this family.  I know that we are Blessed, we are so very lucky that she fell second in line as a kid to this family.  I gave birth to her and that just amazes me on a daily basis. 

Every day I thank God for my many Blessings and then I pray for the health and well-being of my family.  I add other things that I pray for them; but always, I thank God for the funny little girl that keeps this cookie from falling apart and pray for the wisdom to guide her through a whole different world that what her sister and her brother are navigating.  I refuse to let her get lost in the jumbled world she walks through each day.  I try to make sure that she knows her own worth to give her confidence, knows her limits to keep her spirit from becoming exhausted , and respects what her mind needs in order to keep it growing but also keep it in a place where she finds peace from the chaos.

You know they aren't kidding when they tell you sometimes the kiddo with the extra chromosome will be your easiest.  It never ceases to amaze me how often this is true.  Watching her grow with a special brother is an interesting journey.  Her desire to be his sister and connect with him, to be that special someone he wants to sit with and be with...that is a relief and a joy to observe.  He is a part of her world and she often takes a while to share him with others, afraid that they won't accept him or will treat him poorly, so she feels people out and waits.  Once she gives the gift of introducing her brother, I know that she's brought someone into her heart for the long haul.  That's what he means to her.  I love this girl and all the facets of a complex personality that she brings with her. 

Go get em Number 8!!!  :-)  You know that this family and this cool little brother are sitting in the stands cheering for you, on the court and off! 

Ice Cream for lunch?

Day Five:  Blogging for Down Syndrome Awareness in the 31 for 21 Challenge!

So the other day, Bradley went down for a much needed nap.  Sometimes we have to fight a little bit, but today it was a quiet little token argument that quickly settled into his even breathing and the occasional cute little snore.  When I heard him get up, I was in my room and he took off down the hallway past my room and into the kitchen.  As I made my way to him, this is the scene I found waiting for me: 

That is pizza in his hand, and he had to open the fridge, open the drawer to find what he wanted.  He pulled out the pizza.  What I am not sure about was if he opened the freezer door first and went for the ice cream (it's sitting on the ground in front of the freezer), or if he went for the pizza first.  Either way, in my head I see him going for ice cream, because it was easiest to find...but looking for the pizza because he really does love pizza.  Or maybe he just grabbed the pizza when he heard ME coming down hall figuring if he started with pizza first there might be more likelihood for me to give in to ice cream after.  He also doesn't say ice cream, that's more of a point and the sign is tough for him, so perhaps he wanted to make sure we were communicating as clearly as possible so that I understood how much he would like both pizza and ice cream.  Hmmm

Lucky kid, he got both, I mean, if he makes an effort with food - well, who am I to stall the wheels of progress. I need him to intake calories and if I have to keep pizza in the house to keep him eating...well, Dominos is 5.99 and I can make pizza dough...so it's just a matter of determining how picky he is going to be about his pizza and going with what works. 

Food is a fickle thing with him.  Sometimes we go out just to encourage him to eat.  Sometimes I beg for recipes so I can duplicate his favorite things at home and sometimes that works... and sometimes, he falls asleep with his head on the table before his meal gets there and all the planning and work is for a go box to try at home later or tomorrow.  Such is the way of it.  When your kid is food challenged and there are only so many things he will eat, can eat, feels safe eating...then you can get pretty creative and go quite a bit further than you would believe to get them to get the calories they need every day.

As crazy as it seems to enjoy the fact that he does the above (totally not environmentally sound I know) I have everything he might enjoy down low so that whatever he grabs is something that I would love for him to eat.  I try to keep the heavy glass stuff up, and keep the soda to a minimum because he can't have it but once in a while the girls get root beer.  He has control of the door and what he wants out of the fridge and for the most part, he'll eat what he pulls out.  When he goes to the utensil drawer, sometimes he he'll pull out one spoon, sometimes he'll pull out five or so small spoons that I send in his lunch and line them up at his place at the table, when I get him settled and open his yogurt, he'll take one bite for each spoon and be done.  Good thing he takes pretty big bites.  Lately, it's been on spoon and he's done very well eating all his yogurt, or pudding or peaches...or ice cream.  Whatever works!  He's gaining weight and he's growing taller...take that Hiatal Hernia!  And I say that in a total we can live like this symbiotically kind of way, not in the mean, snarky way I want to say it!  :-) 

Okay Bradley...what's for dinner tonight? 

Developing His Own Social Context

Day Four:  31 for 21: Blogging to bring Awareness and Acceptance

It’s funny, where my son goes to school is one of the best schools in our town, or so everyone tells me, but he goes to a different school on those school grounds.  Weird right?  When we moved back to the area in 2015, they told me that there were no pre-school openings in our city, that Bradley would have to go to another city for two and half months and then switch back to our city for Kindergarten.  But the principal we had back then for the County was actually a really nice man to us and offered to put Bradley in their District program here in our town to finish the school year as a Pre-K kiddo and then start his Kindergarten year in the same classroom.  His classroom is K through 3, now he is in First grade, we’re talking serious looping if you get lucky enough to keep the same teacher in there.  I think they had four before Bradley ever showed up. 

Our new District principal is a good guy, but he’s new and out to prove himself.  I try to remind myself that he is a bit sarcastic and that he truly does have our kids’ best interest at heart.  But some days are harder than others.  The school principal; however,  is the biggest jerk I have ever met.  He actually has a disability himself and yet is dismissive and arrogant towards our kids and us parents.   Maybe he thinks our kids are soft, maybe he just doesn’t like me in general.  Maybe he can’t stand that we have to walk through their office and get a pass in order to pick up our children at the end of the day.   His level of cranky far surpasses either of my girls first thing in the morning – and dear God, that is quite a feat!  I held the door open for another mom and kiddo in Bradley’s class and he stepped in between, walked through and didn’t say a word.  My: “A thank you wouldn’t kill you” falling on indifferent ears.

The other day, Bradley helped his teacher carry the lunch folder to the office.  When they got there, they dropped it off and then he reached out to take the hand of one of the Secretary’s and pulled her with him.  When I went to pick him up, she saw me and started smiling and laughing and said: “You’re little boy is something.  He came and took my hand and wanted me to walk with him, and who was I to say No, so I went and he held my hand all the way back to his classroom.  He’s so cute.”  I smiled at her, thanked her, and walked off wondering what the Hell she was talking about.  I had to read Bradley’s communication journal to get the rest of the story, (our new principal doesn’t want us talking to the staff anymore, everything through the journals now)  telling me that he helped with the lunch folder, and helped put all the goal boxes away and just had a really great day.  Now, when I walk through the Secretaries say Hi, etc and Bradley’s new friend calls me Hon and always makes a point to exchange sentences with me.   Good job Bradley, way to melt some of the ice around the castle. 

But that’s the way it always is, maybe I have to be his voice when it comes to IEP meetings, advocacy and medical…but in areas that require kindness and compassion, he doesn’t need my voice, he doesn’t need his voice.  In this all important area of life, he needs no words.  He just needs to BE.

Six months ago, he was a very shy little boy, he could be coaxed to maybe give you knuckles, but he didn’t want to look you in the eye and he definitely didn’t want anyone touching him but the family.  But then he started to mature and develop in a big rush, and before I knew what hit me, I walked up to get him at school and watched him hug and then crawl into the lap of a mom that was waiting for her daughter to come out of his class.  From then on, it has been more eye contact, more fist pumps and high fives…and more hugging.  We couldn’t figure it out and to this day I wasn’t sure, but sometimes insight will strike out of nowhere and leave you going…ahhhh…. And figuring it all out as you sit and type writing a daily blog post.  Thinking this through I think I get it now. 

The local Community pool offered Adaptive swim lessons last year.  Two week sessions, Mon, Tues, Wed for twenty five minutes.  Bradley loves water so off we went.  The first night, he never made it off the first step.  The second night, five minutes before class ended he went into the Instructor’s arms.  The third night, I had Dad hand him to the Instructor from poolside.  No looking back from there.  We got excitement and joy, and we got more words.  We also typically missed a week of each lesson to be sick.  But every time he was healthy enough to go, he would sit until it was time, then we he was told he could go; he would get up and walk to the edge of the pool, he went from being picked up and brought in to sort of a jump/fall in.  He has gotten so used to having different swim Instructors in his favorite arena that now he is more interested in people, what they are doing and how they are interacting with him. 

Along the way, he’s had his Service Dog in training growing up with him, and he loves to hug her.  I know, I know, dogs don’t like to be hugged…but this one doesn’t seem to mind all that much, especially if she can get a few licks in.  Bradley usually has his hands in his mouth constantly and always smells and (I believe tastes like) Vanilla Pediasure so it’s on his hands and shirt, so let’s be honest here…for Sheba he’s like a yummy vanilla flavored treat, all the time.  So, she likes him.  Anyway, combine these things and the general, he’s growing up, and Bradley is ready for Social interaction.  He’s ready for people now.  He is reaching out for the kind of social context he is comfortable in, and if you are within his preferred circle, then you are golden.   At a recent family birthday party, he walked up to people I knew and people I didn’t for hugs.  I think he actually sought out certain people because he would get a hug and then walk away.  My cousin was ecstatic when Bradley went to him for a hug.  He’s quite possibly Bradley’s biggest fan only surpassed by the love our Midwife has for Bradley, but he hardly sees him so getting to a point where Bradley is willing to come and love on him when they do get together…yeah, that was pretty cool.

This is the thing about Acceptance.  Everyone has to be ready, not just the world around Bradley, but Bradley has to be ready to accept you.  One monumental step at a time, trivial to most, taken for granted…but that which most take for granted are usually the greatest triumphs and causes of joy in our house! 

Asking and Answering

Day Three:  31 for 21 Blog Challenge!  October is Down syndrome Awareness Month!! 

Believe it or not I am pretty easy going.  I am often scared by this life we lead, but I am pretty amicable about things along the way.  I don’t get confrontational with people who stare, I don’t give angry glares at stupid things that children say out of ignorance about my son; the adults are a different animal all together, they should know better…but make no mistake… I am a mama bear.  Just because I work to keep the claws at bay, you should never assume I don’t have them.   And though it seems a little bizarre when I put it in those terms and refer to my husband, I am just as willing to fight for him too.  He isn’t my cub, but without him I have no cubs so,… yeah, I’m not afraid of protecting  him either. 

And don’t misunderstand me here, I don’t run around looking for confrontation.  But having Bradley has put me in the position that I have to be his advocate.  Right now, he is six years old and non-verbal, he can’t stand up for himself.  His Dad and I have to do it for him.  We get a lot of practice, and we are getting better at it.  As for being in a hospital, it doesn’t terrify me like it used too.   Only very special visits will rob my breath, an overnight with an EEG… not too bad, and I can sit in the ER for an entire evening and not chew the ends off of every fingernail, only half of them.  I now understand what each machine is monitoring and I know what the numbers mean and whether or not I should be concerned by them.  I have learned to compartmentalize my concerns and fears, keeping them firmly in check while I assess and evaluate the gravity of a situation.  So it turns out that I have been in training…  I don’t get bullied by doctors anymore.  I used to be kind of meek, I didn’t question enough or press for understanding.  When Madison was three months she had what they called a “Grade Three Reflux” though they could have easily called it a Grade Four and sent her in for the same surgery her brother would later have.  I managed to get through the testing, the xrays, the constant screaming in pain.  Turns out her meds were too high, her previous GI had tried to anticipate her growth, a growth she didn’t have or exceed.  I was too green to ask the what ifs.  I assumed as a doctor he would know best for her and all would be well.  His best intentions were a bit off base, and I don’t fault him, because all we can do is the best we can…he tried.  We would get her straightened out, I would get used to this Apnea Monitor that would be our constant companion until she turned seven months, outgrew her reflux and didn’t need it anymore.  And life would go on.  But I learned that I would and could question things about the kids. 

When Eric had his heart failure in 2004, I was still hesitant, but I got the answers to my questions…and I would get stronger and bolder after that.  I would take his pulse as he tried to return to running and not happy with how high his heart rate was, I went to his next appointment with him.  A change in med dose and we got the results he could live with, literally.  When his asthma kicked up in the middle of the Ocean while he was on an Oil Platform in Iraq, I went to see his Cardiac nurse, and when she popped me in front of his Cardiologist I squelched the desire to escape, stood my ground and had my say.  Turns out these were all just the warmups to prep me for the real battles ahead. 

I have since stood up to a Pulmonologist (but really only because the head doc of the PICU looked at me and asked me what I thought – baby steps) and I have stopped more and more the constant attempts to get IV’s in my son when I know there is another easier and more viable method of getting his meds into him, to the extent that I was ready to gather him up and take him to a different hospital in the middle of the night.   I have battled with Eric’s cardiologist, and I have stumped his doctor with questions she never even though to ask that prompted a call to that same Cardiologist.  I’m not afraid to ask anymore, I’m not afraid to fight anymore. 

So here’s what scares me… critters that slither.  I was working in our front yard and came across a surprisingly large snake skin…I quite working in the front yard.  I have a healthy respect for things that slither and I choose not to invade their territory as much as possible… for that day, they got to stay in their territory because apparently that sucker had climbed this rather overgrown bush like tree.  Snakes in trees?  Yeah, nope, not me.  That’s a whole other nightmare.   

But to stay on track… things that scare me other than critters that slither?  The Answers.  As much as we need them, I am often afraid of what the answers will be, and afraid of the answers that aren’t available.   Talk about darned if you do and darned if you don’t…In the realm of medicine, I fear for Bradley and his health; but honestly, I worry about his Daddy too.  And I worry about Bradley at school, where is the path he’s on going to go and is that the right path for Bradley.  Is it the right path for all of us?  I worry about the girls, are they doing all right mentally, physically and especially emotionally.  I may not know what to do with the answers I get, but I still ask the questions.  I’m guessing the most important thing is that I am still willing to ask the questions. 

Day Two: 31 for 21 Blog Challenge!

Bringing Awareness is not the only Challenge in this House!  ;-) 

Everyone has their Kryptonite…some of us more than others.  Some of us have an alphabet list of them and just keep track of them that way, makes the paperwork easier.  I could start at A with my list, but I’ve decided to skip ahead and jump to P.  Quite a jump I know, and to avoid any spoilers, anyone contemplating having children, you might want to bow out of here now, this will not be pretty.

Forewarned?  Good...onward then friends.  You see, I have never been a super star mom that had my kids potty-trained after their first step.  I used to avoid discussions of success because it was just ridiculous to try to compete with other moms because quite early on I learned a few things about my children and myself along the way.  Research told me, no one is potty training successfully until everything is properly developed.  My girls are late bloomers!  Trust me on this, I didn’t realize it then, but now I see it very clearly.

All that well intentioned advice would not work, ever, in any way, shape or form.  In fact, the more pieces of advice we tried, the more stickers and coins and candy… the more resistance.  Who refuses candy as a child?  A pint size Dictator that’s who. 

Cute little panties to encourage her to give up diapers?  Wait, laughing until tears here on this one… My daughter had a drawer dedicated to her Princess Panties.  There was ceremony, there was Pomp and Circumstance…there was pee down the Princess and Poop down the leg, and that stupid Princess kept right on laughing at me…like nice job Mom, I am dirty now.  Yeah, well shut up your Highness, I have you in six poses and five colors in quantities of five….I can lose you in the trash just as easily as rinse and wash you!  My daughter outgrew more panties that she never wore than she did that she could wear.  But her Grandmas were quite sweet and kept the parade of Princess panties flowing into our house with Birthday and Christmas frequency.  It was like she knew which box was the panties, and as much as she would ignore and discard those annoying panty things would be completely reversed later when she got older and felt she needed bras at a tender age of – well, younger than she needed them and the Grandmas provided those too.  Her Dad and I felt that there should be something to train before we worried about training… but what the Heck, her emotional stability was more important than her rate of development in certain areas…but there I go…completely off the track now.    

And just when I thought she had it… Yeah, we brought a new baby home and it’s almost like there was a memory wipe on how to use the potty at all.  In fact, she was acting like she had never even seen a potty before in her life.  As a sleep deprived new mom having spent eight days in labor off and on…yeah, whatever, the pint size dictator in our house won again.  All the Princess Panties went into the bottom drawer and were out of sight for months.  Until one day, almost nine months later I pulled something out of the bottom drawer of her chest, she noticed the Princess Panties and said she wanted those.  I said to her, you have to pee and poop in your potty and you can have them all the time.  And that was it, she went like she was doing it for years!  I’d have pulled my hair out if I hadn’t been so excited.  One down, one to go! Holy Crap!  Easiest thing I ever did.  Good Grief!!  Massive, and quite painful eye roll!

Everything that didn’t work for the first one, didn’t work with the second one.  And everything that did work for the first, didn’t work for the second one.  I was tempted to send the second one to potty camp but couldn’t find any such beast to send her too.  Since heavy drinking was out because I really don’t like alcohol…we kept pushing on.  And we HAD it, we were on the cusp but  just couldn’t get there.  Frustration set in!  I actually yelled at her for a mess, and I stopped in the middle as I caught myself.  What the Hell was wrong with me?  Yelling at my daughter because she wouldn’t poop in a potty?  Good God!  I cleaned her up, hugged her tight, told I was sorry, asked her to forgive me, then I told her that I loved her and told her to go play.  From that moment on, I told her Dad, if she makes a mistake, clean her up and send her on her way, don’t say anything.  She had two more accidents, and then two days later it never happened again.  Using the potty was within her control, use it or not – she had to decide, I couldn’t make her do it, she had to decide to do it.  Turns out she is still quite willful and stubborn…who knew!?  The red in her hair gave us all the warning we’d ever need, trust me!

So here I am.  Somehow I have successfully potty trained two children…surely a third cannot be that hard right?  Hahahaha… sometimes I am so naïve it is quite painful! 

Bradley is his own little personality.  He’s developing a little later than the girls, and he’s still not potty trained.  I have tried all the tricks that did and did not work with the girls…yeah, nothing.  I get little glimmers of hope once in a while.  Sometimes he will sit on his potty and we have success…and then sometimes, he likes to mess with me.  And it’s never easy you see, his gastro tract is so compromised he has to have daily Miralax to help him go, without it, he doesn’t go.  With it, well..let’s just say that there are some days that there is no stopping the go.

Two weeks ago, he showed me promising potty habits, we were on the changing table and I asked and he seemed excited so we ran to the potty and success!  Potty dance for all of us!  He washed his hands and off we went.  So I thought – let’s try all big boy pants on Saturday, see how we do!  Oh My God!!! 

We started out awesome!  He peed, we washed our hands, thirty minutes later he peed and pooped and washed our hands!  Woohoo!  We were well on our way!  AND then…then the wheels fell off the wagon! 

Turns out we were having one of THOSE Miralax days… there was to be a lot of going!  A LOT, like epic proportions!  Too bad this didn’t happen right away.  I mean at first I didn’t know, and he was doing well with our old Pediatrician’s method of keep the potty in the room where he is – so I had it on a towel to protect the carpet, and he had easy access while he was confined to the area watching a favorite movie.  Hmmmm…  So about the time I learned that this was going to be a lot of going potty day, he started in his pants, while on my lap, and while I got him to the potty and he finished there… the result was on my pants and in his big boy pants.  Argh!!!!!!!! I have poop on me!!  But wait, there’s more! 

I grab the dog and put her in my room cause hers is not the help I need or want (and dogs are just gross sometimes), I come back and he’s ready to get up so I clean him up.  Thinking I have a minute (and man, I have to stop thinking!) I turn to his potty to pick up the little bowl to take to rinse out and maybe grab new pants for me on my way back…and I hear that grunt, you know that little grunt noise that lets you know it’s coming.  But there was no grunt and then ease to the potty.  NOOO!!!  It was more of a grunt of “INCOMING!!!!!” and plop!  Sometimes the world slows, like literally…like your brain can’t quite fathom the horror before you and it spins out ever so slowly so you can catch up… yeah, like that!  I stared at him in utter horror and fascination, then at the chaos he had wreaked in less than thirty seconds.  In that moment, I bowed to the Universe, took the King of Poop back to his bedroom and back into a diaper.  Then I spent the next thirty minutes cleaning, bleaching and fumigating my house.  I might have used too much baking soda as parts of my carpet are slightly white… I used the bleach on the potty and my pants, not the carpet…I still had a few brain cells working. 

So the current pint size dictator in our house continues to wear diapers and might until he reaches puberty…or at least the week long Thanksgiving break coming up.  I believe that I will have forgotten this debacle of potty training attempt and be willing to give it another go.  But that is not a given…I just might be feeling the pressure of having a son who is almost seven and still no closer to potty trained than he was yesterday.  I know his Gastro issues are quite a challenge, but I do believe that someday we will get there…I just am not placing bets in Vegas for this year.   

The best part:  His Dad walks in the door and goes: “Smells like poop.  And what possessed you to give this a go today?”  He’s still walking around don’t worry, but I kind of wanted to punch him, instead he gave me a big hug and promised that someday we’ll get there.  Good man that Daddy guy! 

Not for the Faint of heart this potty training thing!  Raising awareness one soiled diaper at a time…just kidding.  Bradley will take longer to get there, but he will.  He’ll learn all he needs to learn and he will do it in his own time.  Sometimes you just have to embrace patience and faith…and bleach wipes…bleach wipes are truly your friend! 

Happy Ten Years 31 For 21 Blog Challenge!!!

October 1, 2016

Today marks the first day of October, the first day of the blog challenge: 31 for 21!  It also marks the tenth anniversary of folks blogging for the month to bring awareness.  For me, this is my fourth year, my sweet boy is only 6, so you know, I am a bit late to the game.  Who knows if I will make it to the big Ten... choosing to get to Day One of my fourth year was pretty big for me as it is.  As the struggle continues to find ways to integrate our loved ones with Down syndrome into this somewhat crazy and often times really cruel world, some of take up the challenge to write a blog every day for a month.  Apparently that crazy that runs rampant in the world is also a wee bit crazy running through me. 

Now, it's not hard to come up with topics, it's not hard to come up with the writing really, mostly that part is the part that flows freely.  Often the flow resembles roaring rapids that takes us all on a wild ride that definitely doesn't miss the rocks.  The hard part I think for me, is always finding the time to squeeze it all in.  I am not the short and sweet type...well...at least not in writing.  I am truth not all that tall and some would say I am sweet, and some who know me would use terms like sarcasm, which is quite sweet in some circles I believe.  But that doesn't matter so much... well, maybe a little.  Anyway, the true key for me is the amount of information and the way that I try to convey that information. 

I backed out of writing for almost a year.  I was muted by a strange conversation I had with a fellow mom with a child with special needs and an extra chromosome.  I realized something that day that I really had to learn to come to terms with, and still I struggle with it.  Our story is not the story that would encourage a family that is getting a pre-natal diagnosis of Trisomy 21.  My son is not the healthiest kid and his story is enough to terrify the usual parent.  I have always known that in the moments that someone leaves, they have their thoughts: “He’s so cute, thank God it isn’t us.”  I’d considered being angry or offended for like a split second when I realized this is probably what most people think…then I laughed at myself.  Why bother, I’ve been there.  I’ve had those thoughts in another lifetime.  I felt certain the Lord would not give us a child that needed a lot of medical needs because we were not a rich family.  At one income while overseas, I couldn’t fathom how we could support the needs of a child that wasn’t all that healthy.  That’s why we will be responsible and only have our two girls and not try for a third child…oh, wait… hey kids, sometimes birth control fails.  And sometimes you help God create a beautiful little miracle that comes in a bundle of blue, and down the road you will learn that the extra chromosome he brought with him will bring some medical issues…we’ll be tongue in cheek here and just call them challenges.  Wink, wink, nudge, nudge… 

So where does this leave me?  Silent, actually.  You see once I realized that I could live with not being the welcome wagon family, I had terrible moments when I read about a UK couple that had a pre-natal diagnosis and after researching, they read about a family with a child that had heart issues and decided to abort the pregnancy because they didn’t want those kind of potential challenges.  Challenges again: wink, wink, nudge…never mind…you get the idea.  I felt silenced, what if someone read what I wrote and used that to make up their mind to end their pregnancy, all because my little guy has a really terrible GI system?  Hmmm.  I then considered my readership, all five of you…relaxed quite a bit.  ;-)  Nothing like keeping life in perspective! 

Seriously though, know this.  Always I will choose Bradley.  I know the risks that he faces, I know that his life is not easy and that he will challenge us medically in the near future not just in the long term.  I know that keeping him here and keeping him in a good life are the challenges for us.  I know this.  And I have no choice but to accept this.

And I also know this: Bradley is unique.  From the way he learns, the way he grows, the way he lives, and every medical issue about him.  Other kids may have similarities, but no one is like him.  He doesn’t have heart issues, some do and the problem, while terrifying all the way to the bone marrow – is also more survivable today than ever, and most are lucky enough to go on and live healthy lives.  Gastro issues, Leukemia…all the terrifying buzzwords that we know and watch out for, always on guard for all these terrible things, what a way to live right?

But didn’t we already?  When we become parents we accept the grab bag of worry that comes with it.  When our child comes out healthy and typical, we sigh with relief and push that bag aside.  And then when our child comes down with some terrifying disease or some tough GI issues, we struggle to comprehend and get through it all.  I know people who have panic attacks when their kid gets their tonsils out.  Good for you, you dodged a bunch of bullets to get you through until you have to have your kid put out for tonsil removal.  Guess what, you’re terrified, and in that moment we are the same – rowing the same boat.  When it comes down to it, you get blindsided a Hell of a lot more than I do.  I know what can be, I know what can happen, and while it may suck…I am researching and learning and I am watching and I am preparing.  Why?  So that when the shoe drops, I won’t. 

My wish is the same as any other parent’s: I wish my son didn’t get sick.  I wish my little guy would never again be sedated, pricked by a needle or spend another moment in a hospital.  I don’t wish my son didn’t have an extra chromosome.  His extra chromosome is the easy part, the non-essential in our life that is more footnote than anything.  Oh yeah, we have an extra chromosome in our house, almost forgot.  I suppose we could talk functioning, I suppose we can talk about the days when he doesn’t make his goals and we have to have meetings to talk about it.  I suppose, those aren’t easy days.  But neither are the days when his fourteen year old sister falls into a vat of political bullshit that overwhelms her and drops her off the Volleyball team, understanding and explaining that…damn near impossible.  And the day you have to help each girl understand that life goes on even under the dark cloud of best friend betrayal…there is nothing harder to see than your child in pain: physical or emotional. 

 I guess if you are someone who fell here by accident and chose to read on while you make your decision, all I can say is this: The extra chromosome is only frightening until your baby gets here, or the surprise wears off.  There is more love in one look that your child holds with you than you will ever know again.  Every child is a gamble; you never know what he or she will bring.  But the journey is the best part; it’s the view along the way that makes the trip worth taking.  Maybe your child won’t be in the NFL, or a Rockstar, or a Nuclear Physicist… and those are the ones with no extra chromosomes.  The odds say they won’t be, but we love them anyway.  Maybe raising happy children that contribute to society in some positive way is the best outcome, and guess what – an extra chromosome doesn’t mean they will or won’t.  How great your kid turns out is entirely on you as a parent, how you treat them and love them.  Don’t be afraid, right…truth is we’re all afraid.  Maybe this is better: do not let fear rule your life, accept that there are parts of your life that will bring you fear, acknowledged.  But there will also be a lot of love.  Loving someone as much as I love my son can be terrifying.  Loving my girls and my husband as much as I love them is just as terrifying.  Great love leaves you open to great loss…but the love is worth it.  No matter what, loving this family is the easiest thing I have ever done and the greatest gamble I have ever risked.  I will roll this dice every day for the rest of my life.  Be the person your child believes you to be and love them for who they are: typical, weird, goofy, extra chromosome or not. 

October is Down syndrome Awareness Month.  The life you get may not be the life you asked for…but sometimes the best answers are for the questions you were afraid to ask. 

So here we go.  Day One in the books.  Journey with me for the next little while, who knows we all might learn something new!