I am moving my blogging to my website...I hope you will continue to follow me! Thanks for always cheering me on...
Wednesday, November 18, 2020
Wednesday, November 11, 2020
Getting Down to Business
It's November 2020 and we are 8 months in to the COVID 19 pandemic. I still forget my mask sometimes. The world has definitely adjusted to moving ahead to almost completely online, and so must I.
It is time for me to start blogging again. It's a good way to update my friends about life with Harrison, and I can share more about my other passion, photography, specifically Special Needs Portrait Photography. Ahhh, so that's how Marcie's worlds collide! I know you were wondering!
Harrison is handling life during COVID quite well. Thankfully he gets to go to school in person every day. He is not a remote learning kind of guy. Once in a while, for short bursts, he enjoys it, especially when music is involved. We decided not to register for Hebrew School this year for that very reason. He is well into his Bar Mitzvah prep, but we do not have a date and we are not in a rush, so it's ok. And then... he was graciously invited to join a weekly half-hour T'fillah on Sundays- how perfect! He can practice his prayers with his peers, all singing and chanting, and he gets to see his teacher, who I know he misses. Once again, Gateways, you know how to meet my kid halfway, or closer.
Harry's other favorite thing to do remotely is to FaceTime with his friend Joey, I would say one of his two best buddies. They were in school together in public school and they miss each other terribly. Luckily, Joey loves to entertain Harrison. He plays several instruments and he sings too, and Harrison just dances and smiles to these virtual play dates!
Our street has a lot of kids, all around the same age, and they are pretty tight. It's been really good to have a bubble for both kids and adults. The kids are often out on their bikes, and Harry joins them in his wheelchair, watching them race around and playing with all of the dogs that tag along.
With all of the limitations that were thrust upon us practically overnight, I have found that this year has been full of creativity and inspiration to try things differently, and it has forced us out of our routines. I must say that Halloween was incredible for us this year! The four girls who run together decided to dress up as witches, so Harrison dressed up as their cauldron! He was so thrilled to be part of a group costume (his friends even helped to decorate his costume) and as soon as I handed him off to his coven, he was golden! Each house on the street had a table set up with bags of candy for each kid. And then they sat in lawn chairs in one neighbor's driveway to watch a movie on an outdoor screen- he loved that too! Honestly, I quite impressed myself this year, and it will definitely be a while before he has a prize-worthy costume again (yes he did win best costume at school and he chose a black unicorn with a glittery rainbow horn as his prize).
So Harrison is good. I'm happy to say, so is business. I got an amazing opportunity to do what I have been wanting to do for years, and it was just the boost I needed to work on building Sunschein Photography and bringing my business to the next level.
The boost I got was the amazing request to take School Pictures for Harrison's school, The Education Cooperative. It's really what I've been wanting to do for a long time, and I am so grateful for finally getting the job! And I had so much fun...the kids are so cute, some of them are hilarious trouble makers, and the smiles just warmed my heart. The very best part was how excited the staff were, and how thrilled they were to see photos of their kids that were soooo much better than they have been in the past with the big commercial studios. Big Boost Indeed! Add to that the positive feedback and and appreciation of the families...my day was made! I even got a Family Portrait session booked with one of Harry's schoolmates, and hopefully more will follow. The staff were incredibly helpful in assisting the kids so they were picture ready- positioning, getting their attention, making them laugh. We took as much time as we needed with each student- I do not rush. I can't. I accommodate the kids, their families, whoever I am photographing. I have to if I'm going to get the very best shots and create images that show their true selves. Reality. That's why, for example, I chose not to photoshop out the drool! This is Harry, in all his glory.
I am learning a lot about marketing these days, and I'm doing my best to increase exposure for my business. I hope you will continue to follow me on this blog, and you can see more of the school photos on Sunschein Photography on Facebook and on my Instagram.
Wednesday, October 7, 2020
The GOAT of the Guitar
I've been listening to Sirius XM Deep Tracks channel all day. All Van Halen, all the time. This loss is a big one. Van Halen was my absolute favorite band (always will be) and something about Eddie Van Halen...with that happy mischievous smile and the sound of just one guitar lick- all I needed to brighten my mood. So many parts of my life involved this band and their music.
I guess it all started with One Day at a Time. I loved that show, and I loved Valerie Bertinelli. I don't know why, I just did, as did everyone else- America's girl next door. As she became more well known, people started telling me I looked just like her. Best compliment I've ever gotten, and I heard this throughout my adolescence, high school, and later. Even my hair stylist gave me her haircut after he (so he said) cut her hair once when she was in DC. Strangers on the street would stop me to tell me I looked like that girl on the tv. My high school track coach did not know my name, he just called me Valerie.
In a totally separate part of my life, I went to overnight camp for 5 years in CT, and during a particular 3 day camping trip, Diver Down was played on repeat. My friend and I belted out Happy Trails every time we got on the bus or went on a hike. The best! I was 13. I loved this band!!! Stacy?
I had started to pay more attention to earlier Van Halen songs being played in the radio and every song just killed! MTV was new. I loved watching Eddie and David Lee Roth, they were so fun!!! That band just made me happy.
Fast Forward a year...my two favorite people in the world (whom I did not know personally) by some miracle, met, fell in love, and got married! How perfect!!!
Around that time I also made some new friends- a group of boys- who also loved Van Halen. Jeff played the guitar and always tried to sound like Eddie. They all agreed I looked so much like Valerie, although Lyle said I looked more like Eddie when I smiled. He always said "Gimme that Eddie smile!" That always made me feel so good!
Surprisingly, then, I never actually got to see Van Halen live. I almost did. The boys had a ticket for me. And then, while I was on vacation with my parents, and before I had paid for my ticket, the "smile" boy sold it to another guy who offered him extra money and, the worst part- I later learned that the guy got so drunk he passed out and missed the whole show! How many years has it been??? I will never get over that. I forgave my friend, but I'll never get over it.
So now I am still listening, because this man's guitar sounds always make me smile. Rest in Peace, EVH
Sunday, June 28, 2020
Addendum ...Cannon and Ruby
Lest anyone (including myself) thinks I am a bit dramatic about writing these obituaries for Ruby and Cannon, please know, these dogs saved me. As puppies they kept me company throughout my pregnancy when I was home, not working, and John was working AND building a business AND job hunting. When my son arrived, surprising us 5 weeks early with one medical need after another, they gave me something to come home to from my daily hospital visits for 6 months. They gave me something else to focus on, to care for, to worry about, to stress over, to take my mind off of the nightmare going on with Harrison. And when Harrison finally did come home, they kept me calm and sane as I navigated the new life of caring for a medically complex child.
I know my son loves me, but he can't always show it. I know he needs me and depends on me, but he can't always ask. These dogs gave me what my child could not give to me, and they made me feel like a mom. Ruby was Daddy's girl, and Cannon was a Mama's boy. So that's why I'm a little dramatic.
I know my son loves me, but he can't always show it. I know he needs me and depends on me, but he can't always ask. These dogs gave me what my child could not give to me, and they made me feel like a mom. Ruby was Daddy's girl, and Cannon was a Mama's boy. So that's why I'm a little dramatic.
Goodbye Sweet Cannon
I have been dreading this post.
We lost our sweet Cannon on June 25. It was time to say goodbye.
Cannon was diagnosed with cancer in his spleen and liver, just like his sister was last year. Treatment was not really an option for him, for a variety of reasons. So we loaded him up on supplements and steroids and he started to feel better right away. He had a really amazing 2 weeks. He was so happy, so spoiled, and so very loved.
Before he got sick, the kids in the neighborhood had been taking him on a morning walk with their dogs every single day for about a month. Every morning he would wake up early for breakfast (5:30 or 6 am) and then wait anxiously by the door for 2 hours for his friends to arrive at 8. I don't say "patiently," I say "anxiously." Communicative as he was, I heard a lot of whining and I got a lot of staring..."where are they???" He looked forward to this every day. When he started to feel poorly, he still managed to get himself up out of his crate and onto the front porch so he could at least visit, even if he wasn't up for a walk. It brought such a smile to my face, the love he was filled with to share.
I should backtrack...he turned 13 on May 28, and the neighborhood has been having birthday parties (socially distanced of course, in the driveways) for all of the dogs- there seem to be a lot of May birthdays. When it was Cannon's turn, he was so excited, he literally trotted to the top of the driveway to greet his guests, every time someone arrived! The incredible kids decorated the driveway with chalk pictures and greetings, and he got presents (aka: treats galore)- OMG sooooo elated!!!
Cannon was the Elder Statesman of the street. He was Last Man Standing of his generation of dogs on Pilgrim Rd. Everyone knew him and adored him, he was kind of like the mayor. So sweet, always happy, although not, as I said, the most patient. And very tied to his routine. I've never known a more communicative dog. He had a lot of specific vocalizations, demanding toddler that he was. Anyone on my street can tell you, he did NOT like stopping on a walk so that Mommy could chat with a neighbor. He let us know when he needed water, when it was time for a meal (find her wherever she is in the house and stare her down until she looks at her watch), and when he needed me to sit on the floor because he needed lap time. Yes. One of his most endearing qualities, he absolutely loved to sit on a lap. If you were on the floor, he was on your lap. And with me, he made it very clear when he needed that, and so of course, I complied. Always. How could I not???
His other funny habit was sitting on the steps by the front door when he wanted to go out. He was either on the steps, on a lap, or on his chair, which he claimed years ago.
Cannon was a true lab. He was loving, protective, and always hungry. We have lost count of how many times he has been to the vet because "he got into something." Blankets, socks, shoes, stuffed animals, sofa cushions and even his crate tray when he was mad. Even the most toxic things- he laughed at them. Tomatoes right off the vine? I'll just throw them back up when I get inside. Harry's nurse left her lunch within my reach? Who needs to open packages, I'll just tear through the lunchbox and swallow the sandwich whole, still in the ziploc, it will all come out in one piece later. Need help scraping the dishes in the dishwasher, or cleaning your plate of over easy eggs? Peking ravioli was a favorite as well. And steak. In his last days, Daddy made him steak and eggs every day.
Protective. Not aggressive, just wanted you to know he was there. When Harrison first came home from the hospital at 3 weeks old, Cannon instantly claimed him (as opposed to Ruby, who just saw Harry as an obstacle to attention). But 4 days later, we took Harry away, back to the hospital. What??? You brought me this little baby and then took him away from me? That dog moped like we had never seen. The dog who would ingest anything made of fabric actually took one of Harry's onesies to his bed and just cuddled it close to his nose. He so missed that boy. When Harrison finally came home again for good, 6 months later, Cannon stayed close by. Every time an EI therapist would visit, Cannon would plop himself on the floor between them. "Just letting you know this is my boy and I am here."
Cannon loved the water. He went bananas when we took him to the park and he could run and swim. He would run far ahead but always look back to make sure we were there. He would run and then come back to say "see, I came back! I need a treat!" As soon as he saw the water he was in it. Physical therapy after his knee replacement just before he turned 1 is where he learned how to actually swim, and all he wanted to do was laps! Ruby wanted to have chicken fights in the water, but he would just shrug her away so he could swim. And physical therapy...he loved it. He was so stoic at PT or at the vet, I think he just didn't want us to know he didn't care what we did to him as long as he was getting the love and praise. And I am forever grateful to him for introducing me to his PT who is now one of my dearest friends.
Cannon was happiest outside, sunning himself on the grass. Since Ruby died, he has been sleeping in our room, and always at my heels during the day. He hated being alone. On his last morning, John had to help him go downstairs. He spent some time in his crate, and when he was ready, he picked himself up and went outside. He found a spot on the lawn, and we sat with him and gave him so much love. He was surrounded by Harrison and the kids who walked him every day, and some neighbors. He looked up each time someone new came over to see him, and then he laid his head back down and went peacefully to sleep. We know he missed his sister. He went 5 days shy of the one year anniversary for Ruby. I didn't see any myself, but I saw lots of posts of rainbows over the next couple of days, and only a few hours after he passed, a cardinal flew right in front of me to settle on a tree. I miss that boy like crazy.
We lost our sweet Cannon on June 25. It was time to say goodbye.
Cannon was diagnosed with cancer in his spleen and liver, just like his sister was last year. Treatment was not really an option for him, for a variety of reasons. So we loaded him up on supplements and steroids and he started to feel better right away. He had a really amazing 2 weeks. He was so happy, so spoiled, and so very loved.
Before he got sick, the kids in the neighborhood had been taking him on a morning walk with their dogs every single day for about a month. Every morning he would wake up early for breakfast (5:30 or 6 am) and then wait anxiously by the door for 2 hours for his friends to arrive at 8. I don't say "patiently," I say "anxiously." Communicative as he was, I heard a lot of whining and I got a lot of staring..."where are they???" He looked forward to this every day. When he started to feel poorly, he still managed to get himself up out of his crate and onto the front porch so he could at least visit, even if he wasn't up for a walk. It brought such a smile to my face, the love he was filled with to share.
I should backtrack...he turned 13 on May 28, and the neighborhood has been having birthday parties (socially distanced of course, in the driveways) for all of the dogs- there seem to be a lot of May birthdays. When it was Cannon's turn, he was so excited, he literally trotted to the top of the driveway to greet his guests, every time someone arrived! The incredible kids decorated the driveway with chalk pictures and greetings, and he got presents (aka: treats galore)- OMG sooooo elated!!!
Cannon was the Elder Statesman of the street. He was Last Man Standing of his generation of dogs on Pilgrim Rd. Everyone knew him and adored him, he was kind of like the mayor. So sweet, always happy, although not, as I said, the most patient. And very tied to his routine. I've never known a more communicative dog. He had a lot of specific vocalizations, demanding toddler that he was. Anyone on my street can tell you, he did NOT like stopping on a walk so that Mommy could chat with a neighbor. He let us know when he needed water, when it was time for a meal (find her wherever she is in the house and stare her down until she looks at her watch), and when he needed me to sit on the floor because he needed lap time. Yes. One of his most endearing qualities, he absolutely loved to sit on a lap. If you were on the floor, he was on your lap. And with me, he made it very clear when he needed that, and so of course, I complied. Always. How could I not???
His other funny habit was sitting on the steps by the front door when he wanted to go out. He was either on the steps, on a lap, or on his chair, which he claimed years ago.
Cannon was a true lab. He was loving, protective, and always hungry. We have lost count of how many times he has been to the vet because "he got into something." Blankets, socks, shoes, stuffed animals, sofa cushions and even his crate tray when he was mad. Even the most toxic things- he laughed at them. Tomatoes right off the vine? I'll just throw them back up when I get inside. Harry's nurse left her lunch within my reach? Who needs to open packages, I'll just tear through the lunchbox and swallow the sandwich whole, still in the ziploc, it will all come out in one piece later. Need help scraping the dishes in the dishwasher, or cleaning your plate of over easy eggs? Peking ravioli was a favorite as well. And steak. In his last days, Daddy made him steak and eggs every day.
Protective. Not aggressive, just wanted you to know he was there. When Harrison first came home from the hospital at 3 weeks old, Cannon instantly claimed him (as opposed to Ruby, who just saw Harry as an obstacle to attention). But 4 days later, we took Harry away, back to the hospital. What??? You brought me this little baby and then took him away from me? That dog moped like we had never seen. The dog who would ingest anything made of fabric actually took one of Harry's onesies to his bed and just cuddled it close to his nose. He so missed that boy. When Harrison finally came home again for good, 6 months later, Cannon stayed close by. Every time an EI therapist would visit, Cannon would plop himself on the floor between them. "Just letting you know this is my boy and I am here."
Cannon loved the water. He went bananas when we took him to the park and he could run and swim. He would run far ahead but always look back to make sure we were there. He would run and then come back to say "see, I came back! I need a treat!" As soon as he saw the water he was in it. Physical therapy after his knee replacement just before he turned 1 is where he learned how to actually swim, and all he wanted to do was laps! Ruby wanted to have chicken fights in the water, but he would just shrug her away so he could swim. And physical therapy...he loved it. He was so stoic at PT or at the vet, I think he just didn't want us to know he didn't care what we did to him as long as he was getting the love and praise. And I am forever grateful to him for introducing me to his PT who is now one of my dearest friends.
Cannon was happiest outside, sunning himself on the grass. Since Ruby died, he has been sleeping in our room, and always at my heels during the day. He hated being alone. On his last morning, John had to help him go downstairs. He spent some time in his crate, and when he was ready, he picked himself up and went outside. He found a spot on the lawn, and we sat with him and gave him so much love. He was surrounded by Harrison and the kids who walked him every day, and some neighbors. He looked up each time someone new came over to see him, and then he laid his head back down and went peacefully to sleep. We know he missed his sister. He went 5 days shy of the one year anniversary for Ruby. I didn't see any myself, but I saw lots of posts of rainbows over the next couple of days, and only a few hours after he passed, a cardinal flew right in front of me to settle on a tree. I miss that boy like crazy.
Monday, May 11, 2020
Post Mother's Day Quarantine
Monday. The day after Mother's Day.
You made me feel like a mommy today :)
You woke up happy, you enjoyed watching school videos with me, and you had fun during music group with school on Zoom. You had a seizure after lunch and napped, and woke up happy again, and we played. I cuddled up to you in bed and we made noises with our mouths, and played with our lips and tongues, and you giggled. You looked me in the eyes and smiled. We went into the living room to relax and you fell asleep cuddled up to me, holding my hand, not letting go. Thank you, love. I needed this. I cherish this. It may not happen every day, or even often, but I know it can, you have it in you, and I am grateful for that always. I may not always seem like it, but I do love being your mommy.
You made me feel like a mommy today :)
You woke up happy, you enjoyed watching school videos with me, and you had fun during music group with school on Zoom. You had a seizure after lunch and napped, and woke up happy again, and we played. I cuddled up to you in bed and we made noises with our mouths, and played with our lips and tongues, and you giggled. You looked me in the eyes and smiled. We went into the living room to relax and you fell asleep cuddled up to me, holding my hand, not letting go. Thank you, love. I needed this. I cherish this. It may not happen every day, or even often, but I know it can, you have it in you, and I am grateful for that always. I may not always seem like it, but I do love being your mommy.
Wednesday, April 22, 2020
Three Weeks Later...
OK, we are in our 6th week of Stay At Home and it's getting long, and tedious, and it's the movie Groundhog Day come to life. There is no end in sight, and I'm ok with that part. I'm accustomed to not knowing when something like this will end. Six months in the NICU will do that to a person.
But, I am getting really sick of the day in and day out of the Same Thing. There is no variety in this house. I am still determined to have at least ONE productive thing to note each day with Harry. Lately though, it's a lot of videos and story time, which is fine. On a good day, he will be really engaged in those videos and stories. One in particular the other day was amazing, actually! We listened to a story in the Epic Library from school called Sled Dog: Powerful Miracle. It's a true story about a sled dog named Isobel who loses her sight. The story is beautiful, and I was really excited to remind Harry about our friend Cathy and her blind pugs, and the books she has written about them! We FaceTimed with her and Harry read the book (played the Read Aloud) to her, and she absolutely loved it! And he really loved sharing it with her! He chose to read that story again the next day, with a big smile. That was a good day.
Today, however, was more representative of our days in general. For the past. few weeks Harry has been sleeping practically through lunch, and he might play a little with me in the afternoon but most of the time has seizure activity and just wants to snooze in my lap. Often when the nurse gets here, mid to late afternoon, he perks up. Today he actually woke up earlier in the morning, and I had ONE activity I wanted to do with him. One. He was good for a couple zoo videos, and then the rest of the day with me was either seizures or sleeping. Heidi is here now, and he's finally alert. All I want to do is make a video of him using his blue button to tell his teacher Kelly about the rainstick he made with Lori, for their lessons about Australia. But nope. I'm hoping tomorrow will be better. I want to get him up in the morning and start doing things- help me bake, get in his stander, read some stories together, play on his iPad, practice eating some foods...Is it me? Not to compare, but I don't know any other severely complex kids who aren't at least responsive to their moms. They make progress, they smile...have I just not done enough? Anyone would say I'm a great mom and do a ton, but I'll always feel like I'm not doing enough as long as he continues to show no interest in me. School is where he is productive, and at home with Lori in particular he is productive. Not with me. I am bored to shit because I just sit here waiting for a small window where he is awake and aware that I am in the room!
Anyway...my Noonday business is dead because none of my hostesses want to do online shows, understandably. My photography has been the one saving grace in my life...I've been offering Front Porch Photos to document this time in the life of Planet Earth, and asking for donations to Amego. It's been amazing! I have a reason to get out of the house, actually socialize with friends from a safe distance, even meet new people, I have "work" to do when I finish the shoots, and I am raising money for a great cause. This project has definitely kept me sane and happy and productive, and it's my way of being able to do something for those in need. I'm really proud of these, too. Here's the link: https://studio.shootproof.com/v3/274593/gallery/11964758
The other thing I have discovered in Sseko Designs. A company similar to Noonday, but they work with one group of women in Uganda, making clothing and jewelry, to enable women to go to school. It's a beautiful cause. The items are fun and pretty- I got to see them through an online party hosted by Jennifer P. Because I have so much Noonday I really was not expecting to purchase any jewelry, but one charm really resonated with me. It's a cactus. I don't know why it spoke to me so immediately, but it did, and when I read the meaning behind it, I understood. I'm not sure how I will wear it or carry it yet...somewhere that it will stay with me and I will have it as a constant reminder that I am all good.
But, I am getting really sick of the day in and day out of the Same Thing. There is no variety in this house. I am still determined to have at least ONE productive thing to note each day with Harry. Lately though, it's a lot of videos and story time, which is fine. On a good day, he will be really engaged in those videos and stories. One in particular the other day was amazing, actually! We listened to a story in the Epic Library from school called Sled Dog: Powerful Miracle. It's a true story about a sled dog named Isobel who loses her sight. The story is beautiful, and I was really excited to remind Harry about our friend Cathy and her blind pugs, and the books she has written about them! We FaceTimed with her and Harry read the book (played the Read Aloud) to her, and she absolutely loved it! And he really loved sharing it with her! He chose to read that story again the next day, with a big smile. That was a good day.
Today, however, was more representative of our days in general. For the past. few weeks Harry has been sleeping practically through lunch, and he might play a little with me in the afternoon but most of the time has seizure activity and just wants to snooze in my lap. Often when the nurse gets here, mid to late afternoon, he perks up. Today he actually woke up earlier in the morning, and I had ONE activity I wanted to do with him. One. He was good for a couple zoo videos, and then the rest of the day with me was either seizures or sleeping. Heidi is here now, and he's finally alert. All I want to do is make a video of him using his blue button to tell his teacher Kelly about the rainstick he made with Lori, for their lessons about Australia. But nope. I'm hoping tomorrow will be better. I want to get him up in the morning and start doing things- help me bake, get in his stander, read some stories together, play on his iPad, practice eating some foods...Is it me? Not to compare, but I don't know any other severely complex kids who aren't at least responsive to their moms. They make progress, they smile...have I just not done enough? Anyone would say I'm a great mom and do a ton, but I'll always feel like I'm not doing enough as long as he continues to show no interest in me. School is where he is productive, and at home with Lori in particular he is productive. Not with me. I am bored to shit because I just sit here waiting for a small window where he is awake and aware that I am in the room!
Anyway...my Noonday business is dead because none of my hostesses want to do online shows, understandably. My photography has been the one saving grace in my life...I've been offering Front Porch Photos to document this time in the life of Planet Earth, and asking for donations to Amego. It's been amazing! I have a reason to get out of the house, actually socialize with friends from a safe distance, even meet new people, I have "work" to do when I finish the shoots, and I am raising money for a great cause. This project has definitely kept me sane and happy and productive, and it's my way of being able to do something for those in need. I'm really proud of these, too. Here's the link: https://studio.shootproof.com/v3/274593/gallery/11964758
The other thing I have discovered in Sseko Designs. A company similar to Noonday, but they work with one group of women in Uganda, making clothing and jewelry, to enable women to go to school. It's a beautiful cause. The items are fun and pretty- I got to see them through an online party hosted by Jennifer P. Because I have so much Noonday I really was not expecting to purchase any jewelry, but one charm really resonated with me. It's a cactus. I don't know why it spoke to me so immediately, but it did, and when I read the meaning behind it, I understood. I'm not sure how I will wear it or carry it yet...somewhere that it will stay with me and I will have it as a constant reminder that I am all good.
Thursday, April 2, 2020
Side Effects
I am so sad for the individuals who have gotten this horrible novel virus, and devastated for those who have died because of it, and terrified for the rest of us.
And I am also grateful, for the side effects. Side effects like brilliant and hilarious memes, Read Alouds by celebrities (Dolly Parton is reading a bedtime story every Thursday!), online concerts and performances by big time musicians, Live Home Safaris at zoos and aquariums.
Side effects like time to do those projects we haven't gotten to (and I still haven't gotten to), quiet streets and less traffic, and so many good, happy, positive stories of people coming together (not within 6 feet of course) to help each other, cheer each other, calm each other, entertain each other, grieve with each other, celebrate with each other.
The best side effect I am experiencing is actual pure and wonderfully positive quality time with my son. When he gets home from school he is so tired. Saturdays he just wants to sleep in and chill. Sundays he has Hebrew School in the morning and then he is with a nurse at home for the afternoon. Saturdays is really our only day (other than those way too frequent half school days) to be together, and he usually is just not interested, unless it's a shopping trip to Target or the grocery store. This, though, has been really good for us. He sleeps in, he feels rested, and he is actually happy to see me when he opens his eyes. He smiles, he laughs, he plays. We are bonding.
This thing we are living through right now, it's crazy, and no one would have ever believed it would happen, but it did. I am not stressing about homeschooling my kid. That's not worth it for either of us. That would just be forced activities ending with frustration and disappointment. What I am doing is just rolling with it, playing it all by ear. I say good morning when his eyes open, and I just see what the day brings. Harrison has always been very aware of my mental and emotional state, and he really does react to my frustrations; now I am finally seeing him react to my zen, my calm, my contentment, and it's positive, and happy, and good. I'm very grateful for these side effects.
And I am also grateful, for the side effects. Side effects like brilliant and hilarious memes, Read Alouds by celebrities (Dolly Parton is reading a bedtime story every Thursday!), online concerts and performances by big time musicians, Live Home Safaris at zoos and aquariums.
Side effects like time to do those projects we haven't gotten to (and I still haven't gotten to), quiet streets and less traffic, and so many good, happy, positive stories of people coming together (not within 6 feet of course) to help each other, cheer each other, calm each other, entertain each other, grieve with each other, celebrate with each other.
The best side effect I am experiencing is actual pure and wonderfully positive quality time with my son. When he gets home from school he is so tired. Saturdays he just wants to sleep in and chill. Sundays he has Hebrew School in the morning and then he is with a nurse at home for the afternoon. Saturdays is really our only day (other than those way too frequent half school days) to be together, and he usually is just not interested, unless it's a shopping trip to Target or the grocery store. This, though, has been really good for us. He sleeps in, he feels rested, and he is actually happy to see me when he opens his eyes. He smiles, he laughs, he plays. We are bonding.
This thing we are living through right now, it's crazy, and no one would have ever believed it would happen, but it did. I am not stressing about homeschooling my kid. That's not worth it for either of us. That would just be forced activities ending with frustration and disappointment. What I am doing is just rolling with it, playing it all by ear. I say good morning when his eyes open, and I just see what the day brings. Harrison has always been very aware of my mental and emotional state, and he really does react to my frustrations; now I am finally seeing him react to my zen, my calm, my contentment, and it's positive, and happy, and good. I'm very grateful for these side effects.
Thursday, March 26, 2020
Finding My Balance
We are almost at the end of Week 2 (it's Thursday) of the Stay the F#@k Home Campaign. I've done a little grocery shopping but that's it, other than walking Cannon up and down the empty streets of Holliston, and the highly anticipated daily walk to the mailbox, from where I stare longingly up the street, looking for any sign of movement.
I am actually feeling extremely grateful. My day to day has not changed much, like I wrote last week. We have settled into a very doable routine. Usually I am frustrated that Harry sleeps so much, because I feel like he is sleeping through life. But, I remind myself that his body needs it. His epilepsy is exhausting, and he regularly needs to literally recharge.
Lately though, I must admit I am thankful. As he sleeps through the morning, I can take my time waking up, enjoy my coffee, take Cannon for a walk, engage a little with Noonday customers and photography clients, and think about what Harry and I will do for our ONE DAILY ACTIVITY. That's right. I have very intentionally set realistic goals for us. If I try to plan too much with him, try to force him to "work" or "create something" I will be sorely disappointed. My goal for each day is for us to do something together that brings us both joy. If that means cuddling on the sofa and watching his new favorite movie, or reading Harry Potter, or just closing our eyes and listening to music, so be it. I have accepted that some days will be nonproductive in the tangible sense of the word, but if I can appreciate just being present, and he is content, then I'm doing ok.
I'm also documenting on his calendar that ONE thing we did each day. A few things we have done: FaceTimed with a friend; watched the live videos posted by The Cincinnati Zoo; watched and listened to Read Alouds by various celebs as well as his Rock Star camp director; we had an Irish music dance party on St. Patrick's Day; we took our dog for a long walk. One day he wasn't feeling great (allergies are a bear right now) and I simply wrote that he napped, like the champion napper that he is. Every day is different, and spontaneous. Whichever of his developmental skills we can incorporate into our day, great! All we can do is try.
Today was really amazing! And I will cherish it and I promise myself to not try to duplicate it. We will have many amazing days, and many quiet days, in the weeks to come. Today Harry talked to his Pop Pop on FaceTime, and he helped me make sweet potato gnocchi from scratch! I think I'm as proud of him as I am of myself! I hope it tastes good. It was definitely fun to make. I am so grateful that Harry was awake, alert, and ready to do something fun, and even let me get some pictures! This is an example of posting the precious moments that in no way reflect the majority of the day!
I am actually feeling extremely grateful. My day to day has not changed much, like I wrote last week. We have settled into a very doable routine. Usually I am frustrated that Harry sleeps so much, because I feel like he is sleeping through life. But, I remind myself that his body needs it. His epilepsy is exhausting, and he regularly needs to literally recharge.
Lately though, I must admit I am thankful. As he sleeps through the morning, I can take my time waking up, enjoy my coffee, take Cannon for a walk, engage a little with Noonday customers and photography clients, and think about what Harry and I will do for our ONE DAILY ACTIVITY. That's right. I have very intentionally set realistic goals for us. If I try to plan too much with him, try to force him to "work" or "create something" I will be sorely disappointed. My goal for each day is for us to do something together that brings us both joy. If that means cuddling on the sofa and watching his new favorite movie, or reading Harry Potter, or just closing our eyes and listening to music, so be it. I have accepted that some days will be nonproductive in the tangible sense of the word, but if I can appreciate just being present, and he is content, then I'm doing ok.
I'm also documenting on his calendar that ONE thing we did each day. A few things we have done: FaceTimed with a friend; watched the live videos posted by The Cincinnati Zoo; watched and listened to Read Alouds by various celebs as well as his Rock Star camp director; we had an Irish music dance party on St. Patrick's Day; we took our dog for a long walk. One day he wasn't feeling great (allergies are a bear right now) and I simply wrote that he napped, like the champion napper that he is. Every day is different, and spontaneous. Whichever of his developmental skills we can incorporate into our day, great! All we can do is try.
Today was really amazing! And I will cherish it and I promise myself to not try to duplicate it. We will have many amazing days, and many quiet days, in the weeks to come. Today Harry talked to his Pop Pop on FaceTime, and he helped me make sweet potato gnocchi from scratch! I think I'm as proud of him as I am of myself! I hope it tastes good. It was definitely fun to make. I am so grateful that Harry was awake, alert, and ready to do something fun, and even let me get some pictures! This is an example of posting the precious moments that in no way reflect the majority of the day!
Friday, March 20, 2020
World Wide Tidal Wave
Ugh. It's March 20, 2020. In the US we are finishing Week 1 of a new way of life thanks to COVID19. They say you should document your experiences, so here I go.
Harrison was out of school last week Wednesday and Thursday with allergy symptoms. Holliston closed school Friday, and I was actually grateful that Walpole, where his school is located, was open on Friday. I knew that was going to be his last school day for a while. And it was a good day.
Since I don't have typical kids in the house, I haven't really been able to relate to my friends as they attempt to all of a sudden be Homeschoolers. Honestly, my days have been no different than any given non school day. Actually they have been a little better, because I have discovered so many resources on Facebook that amazing people have shared- celebrities (Betty White reading Harry the Dirty Dog!) and our own camp director Melissa posting Read Alouds, musicians posting free performances (Michael Franti is the favorite here!), LIVES from different zoos around the country, Broadway shows being streamed, and things we haven't even tried yet like virtual rides at Disney and virtual museum tours around the world! What a plethora of culture this world has to share and it is amazing to see so much generosity and creativity from so many individuals and corporations. It would be so great if we as humans across the globe could adopt these kinds of efforts as a new normal. It's cliche, but everyone really truly is coming together, because for the first time in history the entire population is in the same boat.
I've also been connecting like crazy. Skype call with Andrea in Jerusalem, group texts and FB group video chats, and looking forward to Zoom Cocktails tonite with my girls.
I've had a very calm feeling all week, like, this is weird but I will just go on ahead and do what I do, with a lot fewer errands and coffee dates and dr appointments. I've always said John and I have been spoiled with child care because Harrison is medically complex and qualifies for nursing and PCA help. I still feel that way, although we have cut back. Only nurses who are not around several other patients can come over. It's good for me, breaks up the tedium. Harry has been easy, he's been either sleeping or sitting on the toilet watching a movie all week. Like I said, no different than any given Saturday! It's been the same quiet, and the same avoiding working out because I know as soon as I start he will wake up. The same frustration of having all of these great fun ideas of things to do with Harry but never getting to them because he is just not interested. I'm hoping with all of this time stuck at home, we will experience more positive interactions, and that will be our new norm. Not that I don't like cuddling with him, which is mostly what we do! For now, I am learning how to adjust my expectations, again, and if napping is on his agenda then so be it, do what you do best kid! When you are in the mood to play, we will play.
Today is actually the first day of this pandemic that I have been depressed. I've felt deep sadness and frustration and anger, but today, I read a post about nurses needing masks and gowns, and it just hit me. I read a post by a friend who is a labor and delivery nurse at Newton Wellesley, and all I ca think of is those brand new and soon-to-be parents who are there, totally in harm's way, because they are healthy and bringing a new life into the world. And then I started thinking about the special care unit, where Harrison started out, and those babies who are already fragile having to be isolated even more-so, and the nurses caring for them, and their parents, and what if something that can on a normal day be controlled or managed, can't, because there is not enough staff or equipment. Harrison was having trouble breathing. He would not have lasted a day.
Harrison was out of school last week Wednesday and Thursday with allergy symptoms. Holliston closed school Friday, and I was actually grateful that Walpole, where his school is located, was open on Friday. I knew that was going to be his last school day for a while. And it was a good day.
Since I don't have typical kids in the house, I haven't really been able to relate to my friends as they attempt to all of a sudden be Homeschoolers. Honestly, my days have been no different than any given non school day. Actually they have been a little better, because I have discovered so many resources on Facebook that amazing people have shared- celebrities (Betty White reading Harry the Dirty Dog!) and our own camp director Melissa posting Read Alouds, musicians posting free performances (Michael Franti is the favorite here!), LIVES from different zoos around the country, Broadway shows being streamed, and things we haven't even tried yet like virtual rides at Disney and virtual museum tours around the world! What a plethora of culture this world has to share and it is amazing to see so much generosity and creativity from so many individuals and corporations. It would be so great if we as humans across the globe could adopt these kinds of efforts as a new normal. It's cliche, but everyone really truly is coming together, because for the first time in history the entire population is in the same boat.
I've also been connecting like crazy. Skype call with Andrea in Jerusalem, group texts and FB group video chats, and looking forward to Zoom Cocktails tonite with my girls.
I've had a very calm feeling all week, like, this is weird but I will just go on ahead and do what I do, with a lot fewer errands and coffee dates and dr appointments. I've always said John and I have been spoiled with child care because Harrison is medically complex and qualifies for nursing and PCA help. I still feel that way, although we have cut back. Only nurses who are not around several other patients can come over. It's good for me, breaks up the tedium. Harry has been easy, he's been either sleeping or sitting on the toilet watching a movie all week. Like I said, no different than any given Saturday! It's been the same quiet, and the same avoiding working out because I know as soon as I start he will wake up. The same frustration of having all of these great fun ideas of things to do with Harry but never getting to them because he is just not interested. I'm hoping with all of this time stuck at home, we will experience more positive interactions, and that will be our new norm. Not that I don't like cuddling with him, which is mostly what we do! For now, I am learning how to adjust my expectations, again, and if napping is on his agenda then so be it, do what you do best kid! When you are in the mood to play, we will play.
Today is actually the first day of this pandemic that I have been depressed. I've felt deep sadness and frustration and anger, but today, I read a post about nurses needing masks and gowns, and it just hit me. I read a post by a friend who is a labor and delivery nurse at Newton Wellesley, and all I ca think of is those brand new and soon-to-be parents who are there, totally in harm's way, because they are healthy and bringing a new life into the world. And then I started thinking about the special care unit, where Harrison started out, and those babies who are already fragile having to be isolated even more-so, and the nurses caring for them, and their parents, and what if something that can on a normal day be controlled or managed, can't, because there is not enough staff or equipment. Harrison was having trouble breathing. He would not have lasted a day.
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