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Thursday, January 31, 2013

Another Year, Another Challenge

Okay, so here we are in  another year. I have been looking forward to 2013 since a was a little girl.  I know this may sound weird, but 13 is my favorite number. After my golden birthday (turning 13 on the 13th) many years ago, this was naturally the next event to strive for.  In 13 days I will turn 46 on the 13th in 2013! the "46" kinda throws off the coolness of it. I will just pretend I am turning 13 again.  The sort of cool thing about that is that the Eighties are popular again! 

So far, 2013 has not been steller.  I am glad January is OVER! I can only hope that the next month will lead to some improvements. Many , many, many things need to improve, but 1 thing in particular..... learning to live gluten free with Hayden.  
A couple weeks ago, Hayden was diagnosed with Celiac disease. This is certainly not the worst thing that could happen to someone by any means, but when your 7 year old lives on pizza, mac & cheese, cereal and all things glutenful, it is certainly not the best news. I will admit that I cried when I realized this was actually going to happen. He has had absolutely none of the symptoms one would look for to make this diagnosis, but every year he has blood work done to check his thyroid function, and unbeknownst to me, anti-endomysium antibodies. (These conditions are more prevalent in people with trisomy 21) This test result was all out of whack, so we were sent to a pediatric gastroenterologist.  This doctor was a very sweet man who tries to make all this sound like it is not a very big deal.  " Yeah, right! We love cake!!!!" was what I was screaming in my head. 

After an upper endoscopy, the result was final.  No cure, only option is to stop completely eating everything with wheat, rye, barley and some lesser know grains in it. Oh yea, and no dairy for 6 weeks to speed the healing! What!! He never mentioned that tidbit at the first appointment. I guess in the scope of Hayden's life, what is 6 weeks.
I have been reading lots of stuff on line and have gotten some really good advice from some people living with celiac. I know I will figure out how to do this because I have no choice.  I know that the rest of my family, including me, should be tested because it is inherited.  So far I have learned that we like almond milk and that Hayden won't touch gluten free pizza.  When the pizza was served to him, he said, " Yuck! This is gross.", and  put it down. I said to him that maybe he just wasn't hungry and I would save it for later. He said, "Mama, I will never be that hungry.", and walked away from the table.  Ouch.  The rest of us were like, Hey! We are only eating this for you!  I know this will take time, but how long can he live on Chex and Almond milk? 
 Hayden enjoying his last piece of Birthday Cake as he knew it. Wonder what cake will look like this year?
 GREAT NEWS!! Chocolate Ice Cream is gluten free!! We tried Chocolate Rice Dream for desert last night  hoping it would get us through for the next 6 weeks, but Hayden was not impressed. :(


Last night, Glenn brought me home a gluten free and dairy free cookbook called Cooking for Isaiah. So far it looks very promising. :0)  I am thinking of trying the chicken and waffle recipe for dinner tonight.













Sunday, May 13, 2012

Mother's Day- Planting Seeds

Happy Mother's Day to all the moms out there. This is a special day for us to celebrate what motherhood means to us. Some moms want to spend it with their families and some choose to spend it taking a break from the kiddos. However you choose to celebrate, I hope you enjoy your special day.

                                        I have spent the morning with the young ones who get up early. Liam made
me breakfast(poured me a bowl of chocolate cheerios)and gave me his gifts that he made in school. These handmade gifts are always my favorites and the ones I cherish. This year, he drew me a picture of me and planted some seeds for me.  He can't recall what kind of seeds they are. It will be a surprise to see what they grow into...


 Hayden had a Mother's Day Breakfast at school on Thursday. The class sang songs about moms and presented us with flowers they planted and plaster hand prints.









His wonderful God Mother,  Aunt Chris, sent home a lovely note that Hayden wrote for me.


Thank you Chris!







 Glenn end all the kids sent me a dozen roses on Thursday. They are all open now and are just beautiful.
Thank you honey! I love you too.
When Dlyan finally got up around noon, he made me eggs in a basket! So yummy! Thank you Dylan.
My momma with all her grand kids except Ryan who missed this photo op.
I would be remiss if I did not take the time to thank my mother and my grandmother who had the biggest influence on the mother I turned out to be. Truly the strongest women I have ever known.  I am so lucky to say that I will be spending time with my mother later today. I feel deeply for those who don't have the option to do so.  My grandma has been gone for a couple of years now. I miss her very much, but I know she is always with me.  She is the only one who could really empathize with me as she had a son with downs syndrome too. 




Now, before I go, one funny little story from last Mother's Day....
Hayden's Sunday school class stood in front of the congregation to tell what they loved most about their mothers. When it was Hayden's turn, he stepped forward to proudly announce that he loved me most when I played with his Woody.  There were some gasps and chuckles. Luckily, Glenn was standing close by to the mike and grabbed it to clarify that his "woody" was the Woody from the Toy Story movies that he likes to play with! Everyone laughed and I was not arrested.








Happy Mother's Day!!!




Sunday, May 6, 2012

Sunday Morning with Hayden-- Opening Day

In the Dugout 


Yesterday was opening day of baseball.  I could not go as I had planned to have a garage sale this weekend  without consulting my calendar first.  While I was disappointed to miss it, I did really well on my garage sale. That kinda made up for it.  I really need to get rid of a lot of stuff.

 So as I watched Glenn and the boys pile into the van to participate in the Opening Day Ceremony, I could only reminisce about last years season.  




T-ball with Hayden was interesting to say the least!  He loved the first half hour or so of a game, but after that, it was a challenge to keep him in the game.  Sometimes after running to first base, he would just keep running right on past second and all the way to the concession stand (he loves himself a good Ring Pop)! Or, because first base was by the bleachers, he would run to base and then just come sit on the bleachers with me.  I would tell him he needed to stay on base.  Then he would tell me he was done.





Nice hit!!



  
                   Lucky for him (and us), Liam would be his helper and run the bases with him or instead of him.




SAFE! Yeah!! I made it!!!



Hayden covering his base.

Out fielding

Game over!



Time to hit the showers.



Glenn brought me home a sticky kid just so I would not feel so left out of the festivities. 
Thank you honey.





Saturday, April 14, 2012

Sunday Morning with Hayden-- Safe Keeping

I hope everyone had a nice Easter last week.  Easter is my most favorite holiday.  I just love the colors and smells of spring.  Egg hunts, baskets, dinner, it's all good.  The weather was not the best, but it was alright and got better and warmer as the week went on.  With the nicer weather and the kids home on vacation, I am reminded of how difficult this summer is going to be with Hayden.   I say this because every year as Hayden gets older, he wants more freedom.  Like any child would.  He sees Liam leave the house on his own now to go out to play with friends.  Hayden wants to do this too.   He just doesn't understand all the problems that this brings up.  He is unreliable when it comes to looking both ways to cross the street for one.  Also, he is very trusting and would probably go with anyone who asked.   And then there is just knowing how to get back home.  I can't wait for the day he has mastered all these things.  But in Hayden's mind, he already has.  Difficult, might be an understatement.


The day Hayden started crawling was just the beginning. Once he started moving, he found ways through all our defenses. We put child locks on all the cupboards. He sat in front of the one that houses all the kids plastic dishes and patiently figured it out. We put gates on the stairs. Without multiple bungee cords strapping it to the banister, he could get around it.  Things got much more complicated as the first summer approached with Hayden as a  walker.  He quickly became very fast and oh so quiet.  He would go into stealth mode when he planned an escape.  Occasionally, wires would get crossed between whomever was home.  One would think that another was on Hayden patrol, and when he sensed our confusion, he sped into action.  He could not reach door handles yet, but the slider to the backyard was no obstacle. He could get out on to the deck and into the yard undetected way too often.  This was largely due to the dogs having pushed their way through the bottom of the screen on the slider.  Then, if the gate on the deck was open for the dogs to access the yard, forget about it.  


His favorite attraction in the backyard was any muddy hole he could find. As we had a new puppy that summer that liked to dig, holes were in no short supply.  One fine day I remember asking the children where Hayden was.  After everyone gave me the " he's not with me" response.  I called for him from the deck.  He did not answer me and I did not see him.  This sent me into panic mode.  I called the other kids together and started searching the house.  I went back out to the yard where I heard a small splashing sound.  I looked over the railing right down the side of the deck, and there he was.  Covered in mud and having the time of his life!

The first time I found him was right after breakfast and he was still in his pajamas.






After I found him and took some shots, I stripped him naked and took him up to the bath.  He was dressed and looking squeaky clean.  I released him to go downstairs with his sibs while I cleaned the ring out of the tub.  To my dismay, when I came back downstairs, he had slipped out again!!


When I tried to get him out of the mud, he made me chase him around the yard. 




How could you be mad at that face?  I was pretty mad at the other kids for letting him off the deck again though.
I decided to throw him in a tub on the deck instead of having to clean the bath tub again.  This actually became the  bath tub of choice for two summers. 





Let me give ya a kiss mama!

Since last summer Hayden has mastered  locks and those plastic child proof doorknob covers. Already this spring he has made it out on his own into the world.  He went to visit at a friends house one street over.  He had socks on, but no shoes and mittens but no coat.  Kyra was babysitting and fell asleep.  He saw his chance and took it.  He knew exactly where  he was going.  When I think of all that could have happened while he was on his mission, I could cry.  The good Lord was looking out for him.  Or maybe a guardian angel.  I don't know which. But what I do know is that keeping Hayden safe this summer is going to be a full time job.  Wish us luck!

Saturday, March 31, 2012

Sunday Morning with Hayden-- Shit Mittens

At the beginning of Hayden's life, there were just so many things to worry about that something as far in the future as toilet training wasn't even a blip on my radar.  As with any child, I knew that potty training would have to be addressed and that it would probably take longer for Hayden to get through the process. When Hayden was about 10 months old I heard from a friend who had an 8 year old son with Down Syndrome.  She was telling me about some of the challenges that they had faced, and she brought up the potty training issue.  More over, the fact that he had not conquered that milestone yet. What!! Something snapped in my head! I thought there had to be something more I could do than just wait for him to decide to use the toilet!
Now, since I had already trained four of my own kids and had helped with many other children that I have watched over the years, I felt confident that we could achieve this goal in a much more timely manner. So, that very day I pulled out an old potty seat from the basement and sat him on it. 
This wasn't his first time, but early on.
Hayden sat on the potty doing his business for years.


 By the time he was two years old, he had mastered walking, climbing and escaping through any barricade set before him. We kept working on the potty training.
So freakin cute!

His little feet didn't even touch the floor.

The problem was that he would never initiate when he had to go himself.  If I put him on the potty, chances are he would go.    I got pretty good at catching him when he made a "poop face".   I would quickly get him to the toilet and praise him for a job well done.  I thought this was a pretty big step!  I had high hopes of him being completely trained before he went to nursery school.  
I thought I had a pretty good handle on the potty training issue, until... Hayden decided to go it alone....

I wish I new the exact date, but looking back on it, it had to be around the time he was three years old.   He had mastered going up and down the stairs by crawling up and then scootching  down on his butt.  I was having a hell of a time keeping him off the stairs all day, so we had to put up a gate that we could latch at the bottom of the stairs.  It didn't take him long to figure out how to unlatch the gate.
One day he slipped away from me for a little bit. I actually had no idea that he had gone to the upstairs bathroom.  He must have tried to get on the potty himself.  He didn't quite make it.  He had removed his pull-up, but was too slow to climb on the seat and  pooped on the bathroom floor.  The evidence showed that he thought he would pick up the logs on the floor and put then in the toilet.  But when he touched it, it could have been the warmth or the texture, I am not sure which, but he decided to play with it for a bit. He smeared it all over his hands! Some on the floor and toilet, but mostly on his hands. When he was finished playing he decided he better find mama to help clean up his mess. I will never forget him calling me from the bottom of the stairs and his look of triumph when he held up his hands.  They were completely brown and fuzzy looking from the tips of his fingers to his wrists! At first I wasn't sure what he had gotten into. Then I realized what it was....SHIT MITTENS!

The best part was the brown streak that he left down the middle of each and every step of the cream colored carpet on the stairs.


By the time Hayden was four, I hated the thoughts of sending him off to nursery school still wearing pull-ups. Of course the school was use to this with special needs kids and didn't think it was a big deal at all. But I somehow felt that I had failed. I mean we had been at this for so long! He knew what to do, but he was not trust worthy to do it on his own. 
I thought for sure he would be trained before kindergarten.
Close, but still unreliable. 
The staff there implemented a toileting plan that seemed to work during school hours. As soon as he got home, it was a different story. He was pooping on the potty daily, but would pee without notice. We tried underwear, underwear inside pull ups, underwear and plastic pants.  Nothing seemed to make a difference.
Now Hayden is six and a half.  This week something just seemed to click.  We were out of pull-ups and the thought of having to keep buying them was totally annoying!  I told Hayden that they were all gone and he had to wear the "big boy underwear" all day.  He agreed to try hard to stay dry and left for school.  I sent his teacher a note of warning and extra changes of clothing.  Low and behold.... he came home in the same clothes he was wearing when he left that morning!!!  I am pleased to announce that he has been doing well all week! He even told me he had to go pee today in Target.  He went in the stall by himself, I heard him go, and when he came out he washed his hands!   I am one proud mama!

Sunday, March 18, 2012

Sunday Morning With Hayden -- Bye Bye Biscuit

Over the last nine years I have been working on painting my master bedroom. I have lived in this house that long and mine is the only room in the house that has never been painted (other than the builders off white). I have thought about it, planned it, settled on one of the many different color paint chips taped to the wall, and then changed my mind. I am usually very good at making decisions, but choosing what color to paint this room has eluded me.  I always tend to look to nature to help me pick a color.  I love  shades of blue, green and brown. But, I was really trying to stay away from that by doing something total different. Well, I think that was what was causing the hold up.  I was trying not to listen to my gut instinct. I should know better. My gut never leads me astray.


When we first moved in to this four bedroom house, I was pregnant with Liam. We knew he was going to be a boy, so my first thought was to make the smallest room his nursery, put the two older boys together in the biggest room and give the only girl her own room in the middle sized bedroom.  Ryan being the oldest thought he should have his own room. After much deliberation on my part, as the kids already seemed to have it all worked out, I decided to let Ryan have the little room to himself.  As I was due in three months, making a room for the new baby took precedence. Typical nesting. 
Dylan helped me pick a "space" theme for the room he would be sharing with Liam. I purchased a whole space line of bedding and decor items form Pottery Barn Kids. The room was so cute! Sounds like everything was fine, right?


Wrong.
After about six months, Ryan wanted to switch rooms to be with Dylan. I don't know if it was my awesome space paint job, or just the fact that he missed sharing with Dylan, but he was adamant.
This met having to paint the smallest room for Liam. I choose a "Biscuit" theme for the nursery. For those who don't know, Biscuit is a dog in a series of children's books by Alyssa Satin Capucilli. I painted Biscuit murals on every wall. I had so much fun!



I'm not forgetting Kyra in all this, but her room took a couple of years to get painted and she has asked repeatedly over the last two years for it to be redone. I keep telling her, "not till mommy paints her room!" That excuse is getting so old it just isn't cutting it anymore. I had already made one exception and I know that the other kids are not going to let that slide for very much longer.














When Hayden came along, There was no choice but to put  him in with Liam.



So, cut to last August. 
My boys all switched rooms when Ryan went off to college. It just made more sense to put the two younger boys in the bigger room and put Dylan in the smaller room.  I really hated the thoughts of painting over Biscuit. But, Dylan just wasn't having Biscuit on his walls. He was turning 16 at the end of August 2011 as Ryan was leaving for college and the "space" themed room that they had shared. He asked me to please paint the room before he took it over. He knew my room wasn't painted yet, but with his charm and blue eyes, he persuaded me to do this for him. It didn't take much. I wanted him to be happy with his new room and it would be the first time in his life he wouldn't have to share. I let him pick the color(s).  
At first I regretted this decision, as he choose deep purple, black and gold. I have to say now, that it is totally Dylan! He has a good eye for color.


I began painting the room for Dylan at the beginning of September. At first, things were going smoothly. Then, not so much.... The trouble began very late one night after we had gotten home from a day at "The Great New York State Fair". Glenn, me and the kids were very tired from a long, hot day at the fair. We all collapsed into bed and fell straight asleep. Or so I thought. Kyra decided she needed a shower to clean off the fair smut before she could sleep. When she came out of the bathroom at 1:30 am, she found Hayden in the hallway  covered in some unknown dark, tacky substance.  She immediately began screaming for me like a banshee! I shot out of bed to see what horrible thing had happened to her only to find poor Hayden cowering in a corner of the hall trying to hide from all the yelling. In my most motherly way, I asked her what the hell was wrong with her! She just points to Hayden. As I lean in to pick him up in the darkness, I can see that he is covered in something. My only thought at this point is that he had a bout of explosive diarrhea. Not unreasonable as he had been eating fair food all day. I grab him under the armpits and haul him into the tub. I turn on the water and start hosing him down. As I start to wake up a bit and come to my senses, I realize that he doesn't smell like shit, and we are still in the dark. I flick on the light switch and as my eyes adjust, I realize that Hayden is purple. What the????
I yell for Kyra who turns on the hallway light and sure enough.... purple paint is everywhere!
Apparently, Hayden thought he would help me finish painting Dylan's room. Like a little elf in the middle of the night. I would wake up in the morn and the room would be finished. None the wiser that he had done the job himself. I am sure that was his plan. What else could he have possibly been thinking?
The mess was overwhelming! How the hell did he get the lid I know I pounded on with a hammer, off the paint can?!! I had no idea where to start or how to clean it up. The walls in the hall that he touched, the carpet, the tub, the white doors?  I grabbed a wet rag and tried washing the purple off the doors. I was not planning a painting the doors. This was just too much trouble at 2 am. I decided to give up and go back to bed. Maybe it would all look better in the light of day.


Wrong.
It still looked B. A. D. We were not planning to remove the wall to wall, but it was the only option. No other choice but to paint the white doors and the trim. The worse part for me was Biscuit. I had negotiated with Dylan to leave the one Biscuit mural that was mostly behind the closet door on the wall. I didn't think this was too big a deal for him since for his new bed he choose a race car bed! What sixteen year old wants a race car bed?!?! A friend actually was getting rid of one that her 10 year old was finished with. It was red and Dylan wanted it black so I spray painted it black. I does look much cooler than I would have imagined.
I digress.  Hayden had finger painted all over the cute little Biscuit that I left for posterity.


Anyway, in the coming days, everything was repainted. Carpet ripped out and I installed a new laminate floor too.







 This week I finally started painting my bedroom. I decided to go with my gut. I will do a reveal in a future post. When it is all done. I hope I can keep Hayden from trying to "help" this time.




Dylan told me later that he paid Hayden to get rid of Biscuit for him. He probably loosened the lid for him and paid him in M&Ms!


Bye bye Biscuit.