Fall Went By Fast

It's November already! Life has been really busy, in such a good way. Business has picked up with sunscheinphotography.com and my new job as a Noonday Collection Ambassador (marcierandall.noondaycollection.com) has been incredible! I've joined 2 networking groups and I've been invited to become a part of a business collective. The last few months have been a blast, and productive, and really good for my head. I'm happier than I have been since I don't know when. Being a mom is great, blah blah blah...and in our family, boring is good, but tedious. And physically harder every day. But with several families reaching out to me for photography, and with my Noonday Trunk Shows and FB posts (Shine On With Marcie), my eyes opening to worlds outside of my own- it's been quite an exciting experience, and an absolute blessing for my mental and emotional health!

We still miss our baby girl every day. Her picture is in the front hall, and I look at her beautiful face every time I walk in the door. Cannon misses his sister, and for a long time he has enjoyed being the one and only in the house, but now I think he needs a companion...

Before school started we had a wonderful visit from Pop Pop and Mom Mom! We were all so happy to see them and we had a lot of fun at a corn and tomato festival at a local farm- right up Marvin's alley, and he wants to plan next summer's visit around this festival! 

Harrison went to his girlfriend K's yearly pool party, with a little help from her big brother, and he got to sit in the firetruck at our town celebration day!

And, thankfully, Harry has had a great beginning to his school year. He loves his new teacher, and his best buddy is still in his class. He is learning about Egypt, and volcanoes, and hurricanes, and he is helping to make some crafts for the upcoming craft fair at school! Halloween was the return of the cowboy, with a slight addition to the whole get-up- can you guess what that was?

Hey, have you ever milked a goat? Have you ever taken a selfie with a goat? My friend Cathy and I have!

And oh- the BEST part of the last few months for me...I finally got rid of that awful behemoth I was driving! I was not meant to drive a minivan. I never wanted one. I swore I would never drive one. Yet, for a year and a half, I did. But knocking off the right side mirror 3 times and having the key fob fall apart in my hands while changing the battery- DAYENU! That was ENOUGH! There MUST be options for accessible vehicles, right? There sure are! THANK YOU Honda Pilot for meeting our needs as a family with a wheelchair!!!

Harry still attends his Jewish Education program, and this year he has begun to study for his Bar Mitzvah- I can't believe it! Seriously...this is really going to happen! He is learning the prayers, and he gets to carry the torah around the room for all of his classmates to touch and kiss. It's really going to happen!

Bring on Those Awesome Waves

Can you believe this incredible painting of our girl?! It was created by a friend of James, and she painted it off of a photo on my Facebook page! Every time I walk by it I catch my breath.

Cannon misses his sister too. He is always at our heels, and he hates to be alone. He is getting so extra super duper spoiled...and that's ok. It makes us feel better to spoil him. My lovey boy.

Anyway, wow, what a busy summer it has been! A good way to balance the grief over losing our Ruby girl, and a good way to stay motivated and happy... in addition to building Sunschein Photography, I have also taken a new job as a Noonday Collection Ambassador, and I am loving it! Check out our beautiful jewelry and accessories, handmade by artisans in vulnerable communities around the globe. Our purchases enable the artisans to earn a sustainable income, become independent, and provide for their families. marcierandall.noondaycollection.com

I am really enjoying this new endeavor! I love the pieces, of course, and it is so much fun building my sample collection. More importantly, I have found a way to get out of my "special needs mom" bubble. I am, as we say, making an impact. I am doing something. For others. For people who are not as fortunate as I am to have the support we all need for a fulfilling life.

This is good for me. I am learning new things. I used to try to learn something new every year- drive a stick shift car, scuba dive. Then I was forced to learn new things, like how to change a trach and a g-tube. I'm sure I'm not alone when I say that when I learn something new I feel more confident, productive, proud. So this is good. Self care.

And it makes me better at the rest of my life. Confidence, enthusiasm, puts me in a much better mood to deal with the every day stressors and tasks of making Harrison's life happy and fulfilling. Having two jobs makes me get more done- I am forced to make time for photography AND Noonday, in and around my job as Harry's mom. I've joined a women's networking group, made some new friends, great connections- I feel like I have re-entered the greater world, and it is refreshing.

Harrison- he's having a great summer as well! He did a week at Camp Arrowhead, where he has gone for, what, 5 summers now? He was already passed out by the time I picked him up. Every Single Day.

And this week he is finishing up summer school at TEC, which he attends during the regular school year. He has had a blast! So busy, giggly, silly, exhausted. He sleeps so hard at night that sometimes he doesn't even wake up until he is on the van to go back to school in the morning! Makes it a tad difficult to get him dressed and ready, at 65 pounds, but, hey, do what you gotta do to gear up for another full day, kid. Oh, field trips too! Arcade and bowling, farm animal visits- fun!

We have gotten into a nice routine, too. He gets home around 2:45, spends some time in the bathroom since he has been "holding it in" for the whole ride home, and then he pretty much passes out on my lap. Not a bad routine for either of us.

Now, however, unless it is raining, I think my lap has been replaced...

I wish all of you as relaxing a summer as Harrison is having!

Goodbye Ruby Tuesday

We said goodbye to our sweet baby girl on Sunday, June 30, 2019. She was 12. 

Since she was a puppy, she was sassy. She claimed me right away, running right into my lap and peeing on me as soon as I sat down to meet her. Her breeder called her GG, for GirlyGirl, and we called her Miss Ruby, because it just seemed to fit. We could tell she was loving, but definitely a girl who knows what she wants, and does what she wants.

Ruby came home with her brother Cannon at 11 weeks, and they kept me company in the next several months during my pregnancy. Ruby was a cuddler, and she made sure I was never lonely. She loved to cuddle with me, with Cannon, and especially with John- what a daddy's girl! Oh boy did she adore him. When she heard the garage open she would run to the door and just wait for him to walk in, usually getting hit by the door when he opened it because she just couldn't get close enough to him.

She loved her mommy too, always full of kisses for me. When she got a treat, I would get a nice lick on the leg as a thank you. Her head usually ended up under my arm, and then as soon as she knew she had me she would flop onto the floor and roll over for a belly rub. If I stopped, I would get a swipe with her paw- -excuse me, we are not finished!

She adored her big brother James and her big sister Cassidy. She was ecstatic every time they came over, always the very first one they greeted when they walked in the door. The only one she didn't cuddle was Harrison. He was more of an obstacle to attention than anything else, but she did love him. 

Clearly, Ruby and Cannon have chosen each other over fighting for space when Harrison is in the picture!

Everyone who met Ruby had the same reaction- what a sweet girl. Sweet, yes, and as I said, sassy. A little manipulator, which in a puppy is, of course, adorable! During house training she quickly caught on that if she peed outside she would get a treat. In the yard, she would stare at me until she had my attention, squat, and then ask for a treat. It took me a little while to realize she was squatting but NOT peeing!


Invisible Fence? No problem. If she wants to leave the yard, she will. SHOCK- SQUEAL- run around the neighborhood. Time to come home? Run back into the yard. SHOCK-SQUEAL.

She was a typical black lab. Some of her favorite snacks were hamburger, cheese, pretzels, and cauliflower. And anything she could steal- she was so stealthy! Very sneaky and quiet when she balanced on the chair to steal my sandwich off the plate, or the challahs she stole 4 weeks in a row from my bag or the counter, even the stale one I tossed into the trash!

Ruby also loved her stuffed animals. She always had one of her babies in her mouth when she greeted someone, showing it off with a rolling purr of pride. When she was resting, one of her babies would be safely snuggled into her arms. I will miss that purring, and her loud snoring too.

 

More than anything, she adored her brother Cannon. Their personalities are so different, but they were so obvious litter mates. They had the same walk, the same mannerisms, they even copied each other's bad habits. They fought tooth and nail- literally- covering each other with scabs when they were puppies! And they hated to do anything without the other. They would even wait for each other to go out. Those Cannon-Ruby cuddles were visions of beauty. He is going to miss his sister.

Ruby had lymphoma. She got chemo. She got acupuncture. She had an amazing last month and a half. With all of these treatments she was like a puppy again, so happy and so much energy. She had velvet ears and a wavy coat. She had soulful eyes. I feel extremely privileged to have been with her to the very end. She died in my arms, hearing her mommy and daddy's voices, surrounded by neighbors who came over to say goodbye, and she died on her own terms, literally seconds before our vet neighbor friend walked in the door with the meds to help her pass. Sassy girl to the end. I hope I never find the last clump of dog hair hidden in the corners of the house.

By the way, Sunday evening, or little town was awash in rainbows! Of course, I didn't see any of them myself, but there were so many, and I saw so many pictures of them posted on Facebook, she was making sure I knew she got where she was going. Love that girl so much.

A Productive Year

June 2019. Harry has completed his first year at his new school tec-coop.org. Wow! 

Our lives feel so much different in the past year, like we are finally settling in to our "normal" and I am finally feeling like a mom in addition to a nurse / executive assistant. I kinda like it. Mostly because when I lift him up from his chair his arm goes around my neck and it feels like a hug :)

The Harrison I Randall suite has been life changing. Carrying this child up and down the stairs every day and lifting him in and out of a tub feels like a lifetime ago. And as much as I hate driving this behemoth of a wheelchair accessible minivan (which I swore up and down I would never do), it has been a life saver- well, a back saver. The thing is huge, way too huge for me to maneuver (as evidenced by all of the scratches on the front ends and the side mirror which I have taken off 3 times...) but, a necessary evil. I'm very grateful.

Speaking of being grateful... I have read that being grateful makes your brain feel happy, can lift you out of a funk. I agree. I do have a lot to be grateful for, and it has definitely kept me positive. Grateful for this amazing school. Grateful for his stable health. Grateful for his hard work (which is why he passes out at the end of the school day). Grateful for his developmental progress. Grateful for his solid friendships. Grateful he has finally been given a voice. He takes so much advantage of the communication devices and tools they give him at school- I've posted part of his Progress Report below, so you'll see what I mean.

His teacher Miss Kara is an angel,

and I hate that he will not be in her classroom next year, but I have met his new teacher and she is lovely so I am not worried. The patience, the creativity, the love, and the perseverance of the staff, the access to technology, the beautiful space, the swimming pool- this kid hit the jackpot! Even his bus drivers (always stressful when new people are driving away with your kid) have been super loving and fun, very important when you have a 30 minute drive as opposed to a 5 minute drive.

And the progress Harry has made- so proud! We are so proud! And he is so proud of himself! His teacher summarizes it much better than I can...

Here's something cool. I never thought this kid would be toilet trained, yet he consistently signs that he needs the toilet, even holds it in when we are out because he would much rather use the bathroom than sit in a soiled diaper (can ya blame him?). It's amazing! And when he is ready, he uses his voice to call me in, and then he uses his Yes and No buttons to tell me if he is finished, although he has realized his toilet/shower chair is the best seat in the house

and he could sit there all day listening to music, or relaxing. And bonus- he finally got a toileting chair for school.

Communication at home has improved as well, which is a big factor in our feeling settled. I have always had a hard time communicating with Harry at home, but I'm working on it. We are both so used to my anticipating his needs and quickly reading his thoughts and feelings, it's a big adjustment to suddenly ask him to actually tell me.  I think he appreciates the effort. See, when I bring out the iPad to use a communication tool, he shuts down because it feels like work, and at home he would rather just chill and cuddle (can't complain about that, not many 11 year old boys want to cuddle with Mom- something for my silver linings playbook).  I have met with his speech therapist, attended a parent session about augmentative communication, observed his speech therapy session. I want him to know that communication at home is not meant to be work, but rather a way to make all of our lives easier. One of the speech therapists is going to come to our house to help us get into a routine of using his device at home, in particular, an app called ProLoQuo. It's a great app, and I understand how it works, I just need help becoming fluent with it like they are at school. Harry and I talk about this often, and bless him for having so much patience with Mom who is soooo out of touch with the times!

I think Harrison is also giving me a break because I am doing my best to be more "present" with him. I admit it is easy to slack off after so many one-way conversations, and the occasional developmental setbacks that can be so disappointing. Meals, for example. For the last few years he has been very inconsistent with eating food. After a belly issue he kind of lost interest, and with that, his oral motor skills. Dinnertime was our time together, and it just kind of stopped, and that makes me sad. We have continued to practice almost every day, but the regression has been frustrating and I began giving up way too easily. Lately, though, I am doing my best to be more patient and fun at snack time, and, as I have been advised, just enjoy the quality time together, and if he eats, great; if not, not a big deal. New routine. Gotta be flexible.

I try to be more present with him in general, actually. More time giving him 100% of my attention. He definitely seems to like me more, maybe this is why I get those hugs! And so goes the dance, I make him happy, he lets me know it, and that makes me happy...

All of this might also be related to the fact that he is just growing up. He has grown up so much at school this past year, and at Hebrew School (where, can you believe it, he really is learning to identify Hebrew letters and sounds!) too. He is treated like a big boy, and he feels like a big boy. I notice this every so often, and it hit me again the other day. We went to the barber for his haircut. I have always sat in the barber chair with him in my lap, but he is getting heavy. I decided it was time for him to just stay in his wheelchair as long as the barber didn't mind bending down a little. He was so happy, so well behaved, so giggly- I'm sorry I didn't get a picture, I was just so pleased I couldn't take my eyes off of him! Next time. It was so much easier for everyone, and quick too. Handsome, huh?

Now that school is out, we relax for a week, then go to day camp for a week, and then to summer school. He will be busy, and sweaty, and exhausted, and happy. What more could I want?

Springtime in New England

Springtime in New England- cold and wet, as usual. But to keep with my positive outlook I'm posting pictures of the few and far between sunny and warm days we have seen in the middle of May. You're welcome!

First thing's first- Harry's friend has been back in school for several weeks now, doing great, and so happy to be there. And Harry is thrilled. Still looking for opportunities to get in trouble together, usually succeeding. :) His mom and I still check in with each other, and just look at this sweet gift she sent home to me for Mother's Day...I cannot even express how beautiful this gesture is to me.

Harrison continues to amaze us, especially everyone at school. I receive consistent reports of how much he is communicating, whether he needs the bathroom, wants to move closer to see a movie, or wants to share his teacher's snack (but not tell anyone)! I've mentioned before that I try to learn something new every year, at least. My current challenge is to really (yes I have said this before too) become fluent in AAC, Augmentative and Alternative Communication. In fact I am going to sit in on Harrison's speech session tomorrow at school, and I am working on getting some training at home so I can learn what I need to in real time, in real life.

So far we are coasting through Spring of 2019. More playdates with our friend Joey, who often comes over with fun gear to play with- we got a leaf blowing demonstration and a private saxophone concert!

Harrison also took a day off from school to participate in our local Special Olympics, which was hosted this year by our own town of Holliston! He got to see his old classmates and teachers, he played all sorts of hockey games, and he got his medal. The cherry on top was to have his babysitter as his partner for the games!

Harrison's school uses fun themes to teach the kids throughout the year. It seems that Career Day and Beach Day were the favorites. Yesterday I joined him at school for Growing Together, a family planting day. Harry picked the decoration for the pot, and I chose the flower.

Last weekend Harrison finally got to meet his cousin Brandon, who came to Boston to attend a music festival. Brandon was so excited to meet Harry. Harry, of course, "slept" through most of the visit. But you can see by his smile as we were leaving breakfast with Brandon and Cassidy, he still had fun- he closes his eyes a lot, but don't think for a moment that he's not listening!