States

When you have a child it's like being given a giant book with millions of pages. It seems almost impossible to read through it, it feels like getting to the end will take forever. Then BOOM suddenly you're at the end of the book staring down the barrel of an entirely new book. That's the way it goes.

Tyler leaves tomorrow for states. He didn't do as well at sectionals as we had hoped and it was incredibly heartbreaking for all of us. I spent most of the day bursting into tears, especially when I realized that this would be the last time I saw him wrestle. He goes to states as an alternate tomorrow. If anyone in his divisional weight class cannot wrestle he does. I physically cannot make it there to watch him. With my due date just 9 days away I am nearly unable to walk by noon most days thanks to SPD.

In a few short weeks he will be 18. Shortly after that he could be moving away for a job out of state. he wants to join the military after that in wrestle there. He wants to spread his wings and that amazes me.
He amazes me. His lack of fear, his fresh look at the world, his youth... it's all so incredible. I have raised an amazing young man that I am so proud to call my son. Despite every single screw up I have ever made, despite the drama of his early years. Despite being a teen mom, he turned out OK.

So many chapters are closing for Tyler this year. So many opportunities are waiting for him. I can't wait to see what the next 18 years brings him.

Pictures

I am sorting through my photographs for "fun" pictures of Tyler for his wrestling banquet. It was like a giant flashback into yester-year. So many moments I had forgotten and so many more that I hadn't. My babies are all growing up so fast. It goes by in a blink. It's like flash paper held over a candle and gone in a blink, with almost no trace. Except for the pictures. 

I am so glad I have them. 

Not just About Us

I have this amazing niece, her name is Kimmie and she has mosaic down syndrome. Her and her incrediMom Jody are raising money for International Mosaic Down Syndrome Awareness.
Hop on over and check it out and if the spirit moves you go ahead and help out.
Jody wrote a little for us all about Kimmie and her total awesomeness.

Kimmie is quickly approaching her 14th birthday. She is smart, sassy, funny and she gives the BEST hugs!!  She is in the 8th grade and continues to bring home A’s and B’s. By looking at her you would never imagine the daily struggles she faces. You see, Kimmie has Mosaic Down Syndrome (MDS).

This is a rare form Down Syndrome (DS) that makes up less than 2% of the DS population. We received this diagnosis, just 3 days after Kimmie was born, by the genetic specialist at Boston Children’s Hospital.
Kimmie’s amazing road has been long but our Blessings are countless!! Kimmie was born full term, an adorable 7lbs 3oz 20inches long on March 29th at Falmouth Hospital. At birth she had gurgles and the testing began. She was transported to BCH at 6hrs old and by 12hrs after birth she was undergoing her first surgery. The morning testing had resulted in a diagnosis of Tracheo-esophageal Fistula with Esophageal Atresia. In English, her esophagus had never formed all the way to her stomach and she had a nonsense tube connecting her stomach and her lungs!! At one week she underwent another surgery to remove a second fistula connecting her esophagus and her trachea.  A feeding tube was put in during this surgery as she had never eaten by mouth with fear of aspiration. She needed to heal and then learn to suck and swallow. Here is where her amazing strength went into over drive!
She spent 2wks in the NICU and 3wks in the surgical recovery before being released from BCH.  They told us she would probably have a feeding tube for up to 18mths. She had it 11wks! They told me she would never learn to nurse as I faithfully pumped every feeding for her. By 4mths she was exclusively breastfeeding! Every doubt they have given us, she has proved them wrong!

Yes, she had delays. She walked a little later than my other two children (14mths).  It took her longer to potty train and get her verbal skills together. She still, at 13, sees a speech therapist twice a week. She began stuttering in the 3rd grade. She has sensory issues: no hoods, turtlenecks, ties around the neck. She likes the idea of jewelry but after a few minutes fusses it’s choking her or itching. She is STUBBORN! That is one stereotype of children with DS that is completely undeniable! She has “quirks” things need to be done a certain way, routine is a must! I often call her “my little rain man”. If she slept late and ate breakfast at 10:30 lunch is still at noon and as she eats breakfast “what’s for lunch” is coming out of her mouth.

Kimmie was also diagnosed with Hypothyroidism at age 9. This was not a complete surprise her daddy also has it. It is also very common in those with DS. We have also switched her to a Gluten Free diet as she had all symptoms of Celiac Disease, also common with not only Down Syndrome but with Hypothyroidism. We did have a biopsy done but it was negative, though I was told that she could have a long term reaction as opposed to an immediate reaction. Since the GF change I have seen some great improvements.

I would have to say through all of this her social skills are her biggest struggle. Her maturity level is definitely a couple years behind her peers. She “has no filter”, if she thinks it, she says it, though we don’t have an issue with improper language. She does have an IEP at school and has minor adjustments made as needed within the classroom. She is in a mainstream class room with her peers and has an aide with assignments as needed. She is planning to try out for the High School Dance team next year and she is going to begin guitar lessons for her birthday! She amazes me everyday!

God sent me this Blessing to love and cherish with no warning of the road to come. He felt I could handle it and Blessed me with this precious girl. Would I have changed anything knowing the road we struggled down and continue to travel? Absolutely not!!  She has changed and Blessed my family in so many ways and for that I am Grateful! I wouldn’t have my life any other way.

Banking it

Sam opened his own bank account today. He signed his name and opened an account. It was a big day for him for sure.

My Love

Glad to Have Dad.

My dad is a hero when it comes to my boys. They tell me that "bapa knows everything"     I will often be asked a question (even by the older two) and be told that they don't believe me they are going to ask bapa.

my dad is a full time student at our local college. He is doing amazing.  It may not seem like a big deal but my dad is an as Aspie   As a kid he was called names and made fun of for being slow and not understanding things. he really believed he was stupid. Things have changed so much in the last few decades for kids like ours. What a blessing understanding can be.

My parents took the little boys a few weeks ago and there was a civil war reenactment over at the High School. My dad and husband brought them over and they LOVED it.

Finishing Touches

Years ago I taught myself to knit by watching videos on you tube. I had just started cloth diapering Sammy because he was allergic to the chemicals in every single disposable diaper on the market. We found he hated most traditional diaper covers because they made noise. My only option was to use wool covers. Great! one problem, they are crazy expensive. One cover can go for upwards of 30 or 40  dollars and that was a used soaker, not pants or shorts and not anything really cute. So out of pure necessity I learned to knit and made covers. I bought wool sweaters and made covers. I became addicted to making these fluffy little cover things for my babies. I have made a set for each baby since learning to knit. I just finished Squish's set so he/she can come whenever now.

Stepping Into The Sun

It's been crazy with all the snow here. Sam has had a hard time adjusting  to being home and the change of routine.

Today I stepped into the sun with my boy. He asked to cuddle. He wanted to snuggle and he was so sweet. Half an hour of time where the two of us just existed. It was worth every second.

My fluffy headed boy has such a soft marshmellowy side and it doesn't visit us often. I miss it when I don't see it for a while. I am so glad I could connect with him for even a little while

When life hands you a blizzard...

We are snow bound along with much of the state because of about 2 feet of snow. We are all a little stir crazy here. Sam spent a lot of the day running through snow drifts outside. Nate preferred being inside where it's warm.

We settled on a project and went for it. We made snow cream. Nate remembered the lesson from a year ago and begged me to make it again. We put clean tupperware buckets out to catch the snow. We put them high enough up that animals would get in them. Then we mixed in cocoa, sugar, and cream... the kids loved it!

Snowflakes

No two flakes are alike right? Just like our kids with autism, no two are the same. Each has their very own set of amazing abilities, frustrating behaviors, quirky personality traits, obsessions, mannerism and speech patterns. They are our little snowflakes.

Blizzard

We are currently smack dab in the middle of a major snow storm over here. It's coming down fast and we keep loosing power. I am more than stressed about what this means for the kids and us. I worry that we have enough food (though my mom brought us cocoa and sugar and popcorn so really what more do we need ) We have about 6 inches or so right now but it has really picked up in the last half hour. We don't usually loose power during these storms since we are in the Fairhaven bubble and behind the high school. I am not sure why it matters but it seems to.

It's hard to be positive about being snow bound with 5 children 38 weeks pregnant, but this is my new focus so I will find the silver lining.

My entire family is here. We are safe. We have food and each other and as long as we have power we have Netflix.

Light Therapy

My husband gave me an early Valentine's present. Most women get flowers, chocolate, or a fancy dinner.I didn't. For me, however, it's better than that. I got a light therapy box! Oh I so need this for sure. I started using it right away.
I hope it helps Sammy too. We are so much alike it's scary.

Wordless Wednesday.

Kids

I am so grateful my kids all get along so well. The older kids like each other (most of the time) Nate and Grace are best of friends. Sammy adores Grace and is looking forward to the new baby coming in just a few short weeks. (By the way if you tried to get to my guessing came from this post, you need to put "squishguessgame in the left hand side of the page where it asks if you have been invited to play. So far we only have 3 entries other than mine.)





today Grace walked over to Sam and wrapped her little arms around him and told him she loved him. He smiled and ruffled her hair. It was so sweet. So many families spend their time fighting, I am grateful mine do not. It isn't always roses. Nate figured out how to really annoy Sam and set him off. Sam goes after Nate sometimes too.  They are after all human children.

Just for The Fun

Sammy's backpack and lunch box both broke this week so tonight we went off to find another.He graduated this past year away from the fire engine red back pack that listed his allergies. I finally trust the school and the nurse to get it right. They are fantastic with it. So this is the first year he has had a "real" back pack and lunch box.

He of course picket a loud brightly colored backpack that makes me cringe but He was happy with it. It also has an insulated area so we didn't need to buy a separate lunch box for him to put his bento box in. So excited about that.

He did look at the lunch boxes and tried to convince us to buy a giant 3 person cooler for his lunch box. Ummm yeah ... no.

He and Dan tried on silly hats and listened to music and Sam got to ride on Daddy's shoulders.

It was a nice night out  for an hour.

So close

I am so glad I am almost done. A few more weeks at most and I will be holding squish in my arms. Almost there.
I did find this cool poll for people to guess when they think baby will be here. Take a shot. There may be prizes involved for the two that get the closest
Who will it be?
put in squishguessgame 

and take a stab at it 

it has come  to my attention my link was broken. lets try again  Its a link to a baby gender and size guessing game. let me know if it works.

Super Dan

So I know I say it a bunch but my husband is amazing. Today, my hips were hurting more than ever. He has been helping me get up and down all day while still helping with Grace. He got the boys to clean up the first floor and has been so wonderful to me today. I feel especially blessed today.

Last One

Tyler is a senior this year. I am still not entirely sure where all that time went.

Wasn't it just yesterday he was a wiggly 8lb new born in my arms? How can he be almost 18 years old already?

Wasn't he just that pudgy little baby that loved to snuggle and sing? I remember how just showing him a camera made him smile.  I remember how he would climb up on my lap and snuggle his face in my shoulder as though it was just the two of us.

Wasn't he just that precious toddler that got into everything and explored his world with sheer tenacity? I remeber asking him once to sing me a song because I didn't feel well. He asked me what I wanted him to sing about and I answered, a lion. The song that followed was exactly that... " bout a yiiion, a yiooon, booout a yiiiooonnn!"

Wasn't it just yesterday he cried on my  shoulder afraid the tooth fairy would try to take all of his teeth? Wasn't it just yesterday that he learned to ride a bike and made his first communion? How did the time go by so fast?

It seems like the last few years went by even faster. I swear he just started wrestling and won his first medal, but last night I watched his final home match.

He placed second at the Vocational State Tournament last weekend and Sectionals is only weeks away. His birthday is approaching with light speed and I am both excited and nervous about what that means for my boy. Last night they honored the parents of the seniors and I received the most beautiful flowers from Tyler.

And then... for the very last time I watched my boy ,who somehow looks more like a man then I ever realized,  walk onto the mat. His final home meet of his wrestling career. Tears sprung to my eyes and my throat felt tight. The season is closing quickly and my little boy has slipped away. I am honored to be the mother of such an outstanding young man. The speed that took us here makes my heart both ache and take flight. 

I got it

I got some awesome hugs and cuddles from Sam yesterday. It didn't last long, and it wasn't much, but it was SOMETHING.

I didn't ask him to come over and love me, but he chose to come over. he snuggle next to me. He said I was warm and soft. That is a giant improvement from the last time where he told me I was fat and squishy!

Forced Connections

Sam doesn't want to cuddle. He won't hug me. Right now he hates the world, including me.

Having a child that won't let you touch him is one of the most painful things ever. To want, desperately,  to hold your child and not be able to, breaks you inside. He doesn't really hate me. I know that, but my heart aches to hold him and connect with him, somehow. I just want to wrap my arms around him and make him feel safe. He gets this way when his world is out of control. He pulls in like a snail or a hermit crab. I know it isn't me, but I can't help but feel slighted.
I love that boy.

Today I pushed it. I hugged him. He wasn't thrilled and he just stood with his arms by his side. He didn't smile, but he didn't cry. He didn't run either. I told him I loved him.

Tonight he placed his hand on my arm and just smiled at me. That was it, one quick moment. Just a blink of an eye. It was worth the risk this morning, just to have that moment tonight.

Coach P

Sam learning the penetration step 

Sam has wrestling on Tuesday and Thursday nights. He came off the bus in a very dark mood and was stressing everyone out. I could tell he was stressed out and I wasn't sure there was much I was going to be able to do to fix it.

Practice

Then I remembered it was a wrestling night. Sam perked up and got ready for his class. He LOVES  Coach P.  Sam talks about him more than any other person. He says things he has heard the coach say like  "cut your nails or paint them" He always follows it with "Coach was just kidding". He enjoys the hour or so being part of the team without the pressure of an actual team sport. It's one of the best things about wrestling for Sam. We tried other sports but they just were not the right fit. THIS is.

I am so grateful that Coach P gave Sam a chance to be part of something bigger than he is. The passion Coach has for this sport has an effect of Sam. It makes him want it more.  Sam struggles with understanding emotions and learns  to process them by watching others, over and over and over. Coach P is easy for Sammy to read and so Sam feels safe.

It takes a really special person to coach, even more so to coach a kid like Sam. I am so grateful for Coach P.

Someone Should Have Told Me

Someone should have told me how hard this would be. How hard it is to watch your child spiral into a meltdown while you"re stuck helpless. 

No one told me what this trip to Holland was like.

Not the good, the bad , or the ugly.

The truth it  some days it just sucks and there isn't a damn thing you can do. Some days it's like getting caught in a downpour 2 blocks from home. Some days its like dropping your ice cream cone 5 minutes after you bought it.

Then there are moments when you hear about another family in Holland making great strides. You see them  moving forward and you see the success, the pride, and it screams to you as if it were your own. Because you love all these kids, simply because they remind you of the potential of your own. Because these children give you hope for tomorrow on the days when you would rather curl up on the floor and cry. Because being in Holland is hard, but you are never alone. Thank God you are never really alone.

On days like today when the world just feels so unfair I am focusing on the hope I see around me, because tonight it's what I've got.... and that is better than nothing

Hot Chocolate

There are very few things that can calm Sammy when he gets super worked up. Television is one of them, the other... Hot Chocolate.

Thank God for Hot chocolate. I made him a cup yesterday during one of his meltdowns and it was INSTANT calm.

It's going to be my new secret weapon. Should i buy stock in Hershey maybe?

Winning

Tyler was able to return to the mat today for wrestling. I, of course, was a a nervous wreck. I prayed incessantly before , during, and after ever match. This was a big deal tournament today. It was Vocational States.

Tyler's first match he won by points. The second match he pulled out a spectacular win. Everyone around us was amazed and thrilled he won the match.

He fought a valiant fight in his third match, but he lost. He made no errors and he truly did his absolute best. The things is, so did the other kid, his opponent's best was just... better. It's a hard lesson to learn, but a rather  important one for sure.

I am beyond proud of my boy. He brought everything he had and he fought with every last bit of it.