Category: special needs child

RicStar Music Camp!

On By Erin @ Cracker Crumb LifeIn day in the life, special needs child, special needs parenting17 Comments

Monday morning we headed to Lansing for Wyatt’s second year at the RicStar Music Therapy Camp. Last year Wyatt had mixed feelings about the experience, but there were some challenges thrown in our path last year as well. Wyatt was being weaned off of a medication that was making him a bit grumpier and more lethargic, he was away from his home, and with just me, since Billy had to stay home due to a kidney stone hospitalization. Then Wyatt was thrown into an experience he had never encountered before. It was a lot for him. He had a good time and made some really good gains from his time at camp last summer, but it was a struggle. I remember at the end of camp last year, Billy was free of the hospital and was able to make the final concert and when I saw him in the parking lot I just sobbed. It was relief and also exhaustion from a very emotional week for me, and for Wyatt. This year though, Billy was able to go, and Wyatt’s new medicine is a much better one for him (despite his occasional barf from nausea…)

When we walked in, Wyatt was met with smiles and warm welcoming greetings of “Hello Wyatt!” from the staff. We were whisked right into the ensemble room where Wyatt was assigned to green group, and just like that, music therapy camp was in full swing! I’m not going to lie, entry was rough for Wyatt. He cried the first two hours, threw up at lunch, but then rallied in the afternoon. He is the toughest kid, I swear. I think all of us were a little done in that first day (although I have to admit, the therapy dogs helped me through the day..) After the long drive, the early hour, Wyatt being so upset, the throwing up… we were ready to crash in our hotel room by the time camp ended that day and just veg out. And the heat! Did I mention Michigan is having a heat wave with excessive temps? We walked outside and were blasted by the flames of the sun, I am pretty sure. Lol. So we were more than ready to grab some food and just chill. Which we did.

Day two we were able to relax a bit and have a good breakfast before heading the short distance to camp. And day two was awesome. Wyatt had a blast. I cannot say this loud enough, because my momma heart was so happy. He was just so excited to be there, he was participating, he was having fun and exploring and playing and just was a part of the entire thing. Up until day two, I wasn’t sure if I had made the right choice in enrolling him again after such a rollercoaster of a time last year. I went for it anyway, since circumstances were different this year, and I am so glad that I did because this experience was so good for him, in so many ways. I saw such progress in Wyatt, how he has matured, in his interactions with other people, with being there and trying new things. He showed everyone there his personality which is huge and full of joy. I always say I call him my sunshine boy because he brings the sun wherever he goes, and this year he was full of that sun. He really liked the keyboard this year, and also surprisingly, the triangle. It was super cute that he liked the triangle, and I actually had to order one since he wanted to take the one home that he was playing.

I would like to say that we spent our last day exploring Lansing, but that was not the case. Our tired little family headed back to the hotel, where Wyatt and his dad went to the little hotel store and bought a bunch of goodies, including ice cream – Ben and Jerry’s Phish Food, which the three of us split while watching YouTube.

Day three was just as fun. Wyatt was so happy to be there. I loved that he was trying new things, unafraid, and just going for it. However, we did have to stop for a little disco nap. The entire time we were there the medicine nausea was bothering him again, right on schedule, around lunchtime. I don’t know if it was just because he was off schedule, off his routine, or what, but we would just work around it because that is what this camp does. It normalizes everything that makes our kids feel different and other in typical situations. Where in some settings Wyatt would maybe be stared at or questioned, here it was just part of another day. The camp provides everything you can think of you might need to accommodate every camper, and it just feels natural and makes me wish all situations and settings were like this. It felt freeing for me and for Billy, and if we felt that way, Wyatt must have felt it a hundred times over. It was just…acceptance. A perfect cocoon of acceptance.

The last day, Day 3, is also the big showcase where the campers all perform with their groups and parents and friends and family are invited to attend. This year Wyatt’s group was performing the Pink Panther Theme song, and Wyatt got to kick things off, with a solo on the triangle. He was adorable! Every kid did so well and you could see the pride and the joy on all of their faces.

This week was full of music. It was also full of ear to ear grins, laughter, joy, that good kind of tired, learning, exploration, and fun. We returned home exhausted (except Wyatt who took a loooonnggg nap in the car on the way home) but all ready to do it again next year. We can’t wait!

If you want to read about our adventures from last year, click here and here!

Camp RicStar – Part Two

On By Erin @ Cracker Crumb LifeIn special needs child, special needs parenting15 Comments

Yesterday I left off with the end of Day One at Camp – however, our day was hardly over and we (me really) still had far to go.

We left camp exhausted and ready to get to the house I had rented on VRBO and just relax. I had picked this house because it’s main selling point that they advertised was that it was CLEAN, and the yard looked fantastic – big and grass neatly mowed perfect for playing in, and bonus, was handicap accessible. However, when I arrived, I was instantly taken aback. It looked abandoned and sad and uncared for. I pulled into the driveway, left Wyatt in the locked car, and surveyed the yard, which was like overgrown field. I went up the uneven wheelchair ramp, and the door we were supposed to use was covered in some indeterminate substance and looked absolutely filthy. I just could not deal at this point in time because…. Billy had also called me and had been to urgent care and was probably heading to the hospital. I was literally at my emotional edge. I looked at my child in the car, decided I didn’t want to even go into the house at all, because either I left him alone in an unknown neighborhood in the car (and for some reason I kept thinking about Cujo), or went through the whole process of getting him and his wheelchair into the house to maybe just have to leave anyway. So I went back to car and immediately made hotel reservations. We ended up 2 minutes from the music hall, at the Towneplace Suites by Marriot. I am such a rental house person that it has been forever since I was in a hotel, and this one was like a godsend. It was sparkling clean in our room, spacious, quiet, and even had a kitchen. I think it is probably a business traveler hotel but Wyatt and I were there too, and it was perfect. Comfortable, safe, clean. I could not recommend that hotel more.

Later that night I did get a call from Billy – he was going to the ER. Hours and hours later, we finally learned what was going on with him. A kidney stone! I had been a ball of nerves because I was so far away, so his mom was checking in on him, which made me feel better. However, this also meant he would not be making it up to Lansing to meet us the next night as planned. As long as he was feeling better, we could all deal- well the adults at least. Wyatt really missed his dad which is understandable, and was just another part of Wyatt’s emotional state while we were there.

The morning of Day Two arrived and I felt like I had been through the wars already. But we packed up and headed out, although luckily we got to spend more time sitting around first, and I could have coffee.

Day Two was much like Day One. Wyatt had his good moments, and not as good feeling moments. But he was growing and stretching and that was good. We were both out of our comfort zones and it does you good sometimes to step outside those. I ended up leaving with Wyatt an hour early, he was just so fatigued I couldn’t bear to ask him to go much longer. I talked to the director, and we decided that Wyatt and I would arrive the next day in the afternoon, for rehearsal for the big performance and then the performance.

Wyatt and I spent some quality time playing and reading in the hotel, and then we both went to bed early. I was asleep by 9:15! The next morning we had a leisurely breakfast, got ready slowly, and after a fake nap from Wyatt which I had been hoping for a real one, we headed to the music hall.

Wyatt rocked rehearsal. Like nailed it. He did awesome and amazing. However, once Billy and his parents arrived, that was over. He was done. He didn’t want to participate in camp, and didn’t want to sing in the concert. He ended up going up for his group’s turn but halfway through the song, just sobbed. Yep, my kid was the crier in the concert. After his group was done, I walked straight outside and sobbed myself. It was a long three days, stressful at times, fun at times, highly emotional for us both. But we did it, we made it, and we grew from it, because Wyatt has been a nonstop chatter machine since we got home. Music stimulates all areas of the brain, and I can see how this intensive therapy really seemed to light a fire in him that I haven’t seen for a while. He is curious, mischievous, exploring, and is just using so many words!! I really do attribute this to our time at camp!

As for Billy, he is doing better. He is not back to normal yet and won’t be until that kidney stone is gone, but at least we know the issue and have a plan and things are feeling less painful for him.

And today, it is Friday, thank goodness. Pizza, movies, and then some relaxing family time this weekend as well.

I would definitely recommend this camp or music therapy to anyone thinking about either. Despite our struggles, it was a growing experience for Wyatt, that pushed him in good ways, and I feel that I have seen some very positive gains even from our short stint!

Camp RicStar!

On By Erin @ Cracker Crumb LifeIn special needs child, special needs parenting18 Comments

I don’t even know where to start talking about this! Our last three days have been just so much, so full of everything – laughter, singing, dancing, learning, growing, challenges, and tears.

Let me start by telling you what it is. Jeanie from The Marmalade Gypsy told me a few years ago about this camp, and I knew as soon as she told me about it that it was something I wanted Wyatt to do. He has always loved music and singing and playing instruments but then Covid hit, and we all know what that did. It was created by Judy Winters, to honor her son Eric. Judy sounds like an amazing woman and mother, and I had the honor of meeting her yesterday very briefly before the performance.

From the website:

The Eric ‘RicStar’ Winter Music Therapy Camp was created to honor Eric Winter, a 12-year old CMS music therapy client with cerebral palsy who had a passion for music and a dream of starting a music therapy camp. Shortly after his passing in 2003, Eric’s parents, Dick and Judy Winter, along with Cindy Edgerton, CMS’ Director of Music Therapy Clinical Services, made the dream a reality and founded RicStar’s Camp. Eric’s parents continue to honor their son as advocates for individuals with special needs, with his mother, Judy Winter, leading the way as an author, speaker, and nationally recognized voice on special needs parenting issues.

Also: [This] is a one-of-a-kind, inclusive day camp that provides opportunities for musical expression, enjoyment, and interaction for all persons with special needs and their siblings.

This was the year, I decided. I signed Wyatt up, exchanged a few emails with the Camp Director Cindy, who is also the Director of the Music Therapy Department at MSU, where this camp is held, made plans, and made some reservations to stay in Lansing. And I just realized this post may get long and become a two parter!

I knew going into this that Wyatt would love it but that it would also be tough for him, but I thought, we are doing this anyway, and we will just play everything by ear and be flexible and follow Wyatt’s lead which is just what we did.

So. Monday morning Wyatt and I drove up to Lansing in the wee hours of the morning (7 am), directly to the MSU Community Performance Hall where camp is held every year. We got there, tired but excited, and slightly nervous if I must be honest. Or at least I was. Wyatt was fine. We got all checked in and waited for everyone to get there. Wyatt was green group, and it was a small group of kids ranging in age, with his age being maybe the oldest in that group (there were a few other kids around his age, and a few younger).

The days are divided into five sessions, with a half hour lunch. Each session focuses on something different, and this year they had sessions such as Play a Song, where the kids got to play instruments and sing, percussion, blues and beats, guitar jam, a parachute, music and movement session, and musical theater. I knew this was going to be a long day for Wyatt, and stretch him and challenge him, but we were going to give it our all, along with the support of the many understanding therapists and counselors and volunteers, all of whom were simply amazing.

I say this was going to be a challenge, because for Wyatt, this is like all of his therapies, occupational, physical, and speech all rolled into one in every session, for five hours. It was going to be fun for Wyatt, but also WORK. It was going to be hard, it was going to be tiring, but also in a playful fun way. Wyatt has a motor planning disorder, which means that for him the signal between his brain and his body sometimes gets confused or lost altogether, which can create frustration for him. And even when they connect, it is due to work on his part to make it all fit together. For example, in percussion one afternoon, the kids sat in a circle with a paddle drum (which has made our Wyatt wish list!) and sang The Ants Go Marching while passing drum mallets around. For every ant added (1 by 1, 2 by 2, etc) another mallet was added. So Wyatt had to watch for a mallet to be passed to him, hit his drum once, then pass it on, while singing and watching for another mallet. For Wyatt to do all of this processing at once and make his body respond the way it should was huge, and kiddo knocked it out of the park. All of our days were like this, with struggles and gains, but this one, this one was a huge win. We are going to do similar things here at home, because attending with Wyatt, I was able to learn as well, about music therapy, how much it affects the entire brain, his body, and learn as well different things I could do with him at home.

Wyatt ended up needing a nap at lunch time. He was just worn out. He took a little disco nap in the car with me, then we rejoined his group. He was still tired out but was able to participate.

We had musical theater the first day, where Wyatt volunteered to be Lord Farquaad, the villainous king. We also had guitar jam, which Wyatt never ever ended up liking. The only reason I can think of is that it was a) difficult and frustrating, and b) the music was sort of slow and bluesy, and slow saddish sounding music makes him cry, no matter where we are, even when they are in cartoons.

It was the one session everyday that Wyatt just didn’t even try much, and would just cry instead. It broke my heart so we usually ended up taking a break once the tears started. (if any special needs educators or therapists out there read this and have an idea about this, I would love to hear! It happened no matter what time of day)

In the afternoon we had Play a Song, which Wyatt LOVED! He sang his little heart out. In the application we had to list songs our children like and the very first song they did was one of Wyatt’s favorites, Howl by the Okee Dokee Brothers. Play a Song was a mix of these songs so sometimes they were songs we didn’t know, but that was ok, Wyatt enjoyed it anyway. Then they sang Let It Go from Frozen and Wyatt really let it go! He was singing with all his might, and doing the arm motions and was so loud (they decided my child did not need a microphone, he was loud enough without it). The therapist in charge was like, Wyatt you are the perfect embodiment of Elsa! Listening to him sing and just be so filled with joy brought on the first moment of happy mama tears, let me tell you.

From there we moved on to percussion and then more percussion with beats booms and blues. Wyatt really enjoyed playing the drums.

And that was the end of Day One!

I will post more tomorrow – I still have so much to share, and I want to share it all for anyone out there who is considering this camp or even music therapy!

Thursday Morning Coffee Catch Up

On By Erin @ Cracker Crumb LifeIn special needs child, special needs parenting7 Comments

Hey all! I am soo happy to be writing this from home! I mentioned in my Sunday post that Wyatt was having a 24 hour EEG, overnight at the hospital this time rather than ambulatory here at home. For being so short of a time, really, it felt like an eternity! Probably because this hospital stay Wyatt was healthy and not wanting to stay confined to the room, and wanted to be a lot more mobile than he could be due to all his wires and cords.

However, lets back up! Alllll the way to Monday, Memorial Day. We spent the day with family, with Wyatt playing with his cousin Mermaid Girl and just having a fun holiday.

There was also a lot of sitting around on this blanket, chilling out in the shade. Tiny Bebe was giving her parents a run for the money, and not napping – she totally has FOMO. She slept maybe 10 minutes before she was up and wanting to sit up and look around.

I was glad that Wyatt had such a fun day since the next day we were up and at ’em early to head to the hospital. I packed our bag full of toys, books, drawing paper, crayons (thanks Cindy for this idea!), his favorite snacks, and his tablet – plus my own headphones for me.

Once we got there it was a never ending stream of doctors and nurses, and finally the EEG study team was in to hook little man up. He is actually really awesome at this part. They said a lot of kids fight it, but Wyatt doesn’t mind hook up. He was busy entertaining the nurses/techs with Peppa Pig which he was watching on my phone. Then after 15 minutes (I think) he was all ready. I was so happy that the woman who cuts his hair was able to fit him in last week because he still had a ton of hair for them to work around, despite having a ton cut off last week. He just has the thickest hair. That little ponytail cracked me up.

Billy was at work by this point, he pretty much dropped us off and left, and Wyatt and I just played and snacked and read all day. Well, he did. I did mostly his bidding. I did put him in his wheelchair for awhile to let him wheel around the room for some physical activity which was a bit challenging as I had to move the cord around as he went, but it wasn’t too bad and he got to get out of bed at least. We sat on the bed, we sat on the couch, back and forth, back and forth. I was pretty exhausted by the time Billy got there! Wyatt was doing great though, and was as happy as he could be!

Billy got there in time for dinner, and I took a little walk around the tower building, of course shopping in the gift shop, while he played with Wyatt for a bit. Neither Billy nor I really slept; I slept all curled and contorted with Wyatt upon his request, and I was glad that I did. He woke up at 2 am and didn’t know where we were and it scared him. At least I was right there, because the pull out couch/chair bed thing was actually pretty far away from his bed. It was big enough for two parents I think which is a change from most hospitals we have stayed at. Anyway, I feel like I have really gone on about the sleeping situation!

The next morning Wyatt got up pretty early, 6 am, but the staff started coming in not long afterwards and he was unhooked by 8:30 am. That was the hardest part and the first time he cried while we were there. That glue they use to attach the leads just really sticks in his hair and they had to pull pretty hard, which of course pulled his hair too. My poor kiddo. Soon though he was back to smiles and I took him for a walk around the floor a few times while Billy waited in the room for the discharge papers, and then we were free! Home, we bathed that kid good with Dawn soap to get the goop from his hair and then he promptly took a nap. I actually did too. Lol. Poor Billy had to get back to work but at least this time he worked from home.

We will know the interpretation of the results soon. We got them already in his online med chart but we do not understand all that neurological jargon speak so it makes zero sense to us. I did catch three confirmed seizures as push button events (when I think I see a seizure or seizure activity, I push a button and report what I see). Wyatt has very brief focal seizures – a lot of people would miss them. Sometimes his eyes just shift right for about five seconds and that is it. Sometimes it involves his eyes and his arm jerking up, and is longer, about 10-15 seconds. These breakthrough seizures are so frustrating. He usually has about 2-3 a day at home, and that is what he had at the hospital so we were glad to see what we see at home is pretty much right on.

Wyatt has also been having some difficulties lately, physically, that he hasn’t had before. He has been “noodling” when he tries to stand or walk, just greater weakness than was there before. However, he had a med increase soon after his shunt revisions and it is hard to say at this point which is causing it. We are hoping his epileptologist will be able to shed some light on this for us and if it is his meds, help him out. I guess one of his meds, Onfi, can cause these side effects. So, even though we don’t have all the answers yet, I feel we got some good groundwork laid to find them out.

Today we are going to take it fairly easy. We are going to get some outside time, and I am going to clean but no school today. In fact, I think we are going to segue into a new summer school routine, especially since Wyatt has a ton of appointments and fun things happening this month. I am looking forward to putzing around outside today, and I am sure Wyatt is looking forward to playing in the backyard as well!

And that my friends is it for today. I feel like I wrote a novel today!

Chit Chat Coffee Time

On By Erin @ Cracker Crumb LifeIn chit chat coffee time, day in the life, special needs child17 Comments

This week was a week of reunions. On Tuesday, my little group of friends got together in person for the first time since last fall – thank goodness it is now warm enough to do so! We were down a person in our crew who couldn’t make it which was a bummer, but the three of us who were there were just talking and laughing the whole time and it filled my soul. I went home feeling so refreshed – these women are so important to me and I was so glad to be able to hang out with them again.

Then later in the week, my brother and I tore off the band-aid and got together. So, on Thursday I got to see a sight that brought tears to my eyes. My son and my niece reunited, playing and laughing and giggling together, as they played pirates and got into general mayhem together. Then, on Friday, I went and picked my mom up and we hung out. She and Wyatt had such a blast – reading books, playing on the floor, singing. I got to show her my newly remodeled office, and introduce her to our menagerie of critters. Harry even came out of his hide to see what was going on, and as a nocturnal gecko he usually sleeps during the day.

Marlow was also happy to see my mom.

This week I have also been busy looking through the new curriculum I purchased for Wyatt for next year. Can I say I am super excited about it too? There is a whole unit on rocks and minerals that I can’t wait to “dig” into with him – I even learned of two places to take him next year as little field trips as part of this unit, the Fossil Park in Sylvania, OH, which is about an hour away, and then there is another place about four hours north of us that we may plan an overnight trip around. I am genuinely looking forward to starting next year.

This actually came up when I was hanging out on Tuesday with my friends. None of them homeschool, or want to homeschool, which I get. It’s not for everyone. It is the right thing for my family though, at least right now. And we are enjoying it. My friend said something though that gave me an existential crisis for a few days though – totally well meaning, of course, she loves me, but she said she doesn’t want me to lose my identity and who I am, as I am not just a homeschool mom. I went home and have been thinking all week about just who I am. I came to the conclusion that no, I am not “just a homeschool mom” but yes, it is a big part of my identity right now. I am a mom. I love homeschooling Wyatt, and shaping his education. But the rest of me is the same – I am the same person that I always have been. My priorities might be different, but that happened when I became a mother. I’m still a reader, an animal lover, a nature enthusiast; I’m still painfully shy unless I am with people I am comfortable with, a cheerleader for those people that I love, but also very blunt and plain speaking. I’m a fixer, a problem solver. Curious, creative, with a quick temper at times that I have spent the past few years working on. I still am a daydreamer who wants a few acres of land with animals and bees and an orchard, to travel and see different places. It’s a weird thing to think about . How do we define ourselves? By our likes and dislikes? Our personality? We are more than what we do, that is for sure. My husband is more than a computer guy. One of my friends more than a respiratory therapist, another more than a stay-at-home mom. Anyway, just something I have been lightly pondering this week. Lol.

We also celebrated my mom’s birthday this week! We went to my brother’s where the kids happily played outside and the rest of us chatted and hung out. I am in love with this photo of Wyatt – he looks so happy and content here. Plus I love those overalls I bought him to play in. I got them at a work wear store online, and they are so well made. And most importantly, have reinforced back pockets which we need for our kid who scoots around on his bottom most of the time right now while we work on walking! I can’t even tell you how many pairs of pants we go through in the summer…

Anyway – I have probably rattled on enough for today. What is going on with you guys?

From Smiles to Stitches

On By Erin @ Cracker Crumb LifeIn mom life, special needs child, special needs parenting24 Comments

This week started off with Wyatt’s first day of kindergarten, homeschool style! We had laughs and learning, and my hope is to foster a school year full of wonder and curiosity.

Our week went awry midweek though – early Wednesday morning Wyatt started throwing up at about 3 a.m. I don’t talk much here about some of the medical things Wyatt deals with, but one thing he has is a shunt that regulates the fluid in his brain. He has had it since he was one month old, and has never had a revision, which apparently is pretty unusual for a child to go this long without needing one. Well, one sign that the shunt is malfunctioning is repeated vomiting with no discernible other reason. After he vomited three times, we gathered him up and packed a bag and headed to the ER, crossing our fingers it was nothing. It ended up being a shunt malfunction, which was discovered very quickly by the amazing staff at the hospital. Within hours, Wyatt was in surgery, then in recovery. Within 24 hours Wyatt was home recovering. It has been a whirlwind of emotion and this momma is tired. We both slept in today, and he is now watching Mickey Mouse and eating Fruit Loops while I sip coffee and type this up. Billy is taking today off and is on a little walk and we plan on taking it easy today, but the hospital expects Wyatt to be able to resume his normal life activities probably by Sunday, maybe just with more breaks.

The resilience of my child is amazing. His tenacity and strength of will, which can be a test on normal days, is his power during times like this. He is a little groggier than usual, but otherwise happy to watching his cartoons and singing along.

A Flight to the North Pole

On By Erin @ Cracker Crumb LifeIn family friendly, Michigan, special needs child, special needs parenting, Uncategorized7 Comments

Last Friday, Wyatt was given an opportunity to “fly to the North Pole.” It was definitely an amazing experience, one that we will never forget. 

All week I had been telling him about how we were going to fly to the north pole and see Santa, so he was pretty excited when we arrived. And just like any other flight, we had to check in for our boarding pass. I loved that even the monitors said that we were checking in for the North Pole! And Wyatt looks cute and tiny sitting there waiting for his ticket. Lol. 

There was an orchestra playing, decorations everywhere, and Wyatt was grinning from ear to ear as we moved to the next phase of our day. We had to check in with the event, where they gave him a sweatshirt, and a name tag, which reminded me of Paddington Bear, that hung around his neck. There was more music being played here, with people in costumes greeting the kids and entertaining everyone until we moved to the security line. We did have to go through security, as we were getting on a real plane and would be in the terminal. This was the only part that gave me some anxiety – because Wyatt was in a wheelchair they moved him to the other side of the gate – without me! I was very nervous about my kiddo being left there without me, and I asked the TSA agent to please make sure he didn’t wheel away. Wyatt didn’t take off but he did try, that little monkey! 

Once we were through and I could breathe again, we were zoomed off by an elf to the terminal to wait for our plane. This area had clowns handing out balloons and playing games, and the flight crew was on hand to greet all the children. This, I think, was Wyatt’s favorite. He was in awe of the pilot and co-pilot. They gave him some little wings, which was pretty cool too. Finally, our plane arrived taxied up and we were ready to board our flight!

It is all very choreographed and efficient, so things are kept moving, partly because small children are not usually super patient. So I didn’t get as many photos as I wanted, but I did capture a few moments. Wyatt was also obsessed with the seat belt. I ended up keeping him on my lap, seat belted in. And then, we “took off”! The plane in reality taxied around for about an hour, and even gathered some serious speed to mimic take off. We had to leave the window shades down though, to maintain the illusion for the kids- which was a battle between me and my son, who kept wanting to open it. Lol. On our flight we were served lunch, and the elves sang carols. It was a great time, and Wyatt loved the music, and the actual plane itself. Once we landed, we were whisked away through the North Pole’s airport to “Santa’s castle”, or the hotel. Everything was decked out in Christmas decorations, cookies and candy and most importantly, coffee, lined the tables for us to snack on. Here they also had a show for the kids, of characters dressed up like superheroes who put on a mock battle, and Anna and Elsa were there singing all their songs. The kids were called up one by one to see the big man himself, and then – we went home! But not before we were given, literally, a sack of presents for the kiddo. 

The generosity of the donors and volunteers that put this day on was immeasurable. The time, the planning, the gifts, the people from the hotel to the Silverliners who organized it, to Delta Airlines who flew the plane – it was an absolutely perfect, amazing, one of a kind day.

Here is a link to a local news story about it! See if you can spot us!

Getting Hygge With It

On By Erin @ Cracker Crumb LifeIn food, parenting, special needs child4 Comments

There is something intrinsically so appealing about the Danish/Nordic lifestyle, the feeling of coziness that they call hygge. As an American, I feel that I can disappear into my endless to-do list, which gets longer everyday. My son has cerebral palsy, and we are running to therapy four days a week. We have at least one specialist doctors appointment a month. And that is of course in addition to all of the rest of our everyday things we have to do, that everyone does. Pay bills, grocery shop, clean, work if we work, go to school, all these things. Where do we find time to indulge our own selves, to take care of our own souls? It’s a rabbit hole for sure. The answer is that we need to find time, make time, just let stuff go a little bit, and enjoy the moments before they are gone.

This is something I have been reminding myself for a week or two now, since reading a few books on the subject, and looking at Pinterest and YouTube.

It’s the food that is drawing me in right now. I used to love spending time in the kitchen, making soup and baking while dancing around drinking a glass of red wine. Now, I feel like food has a different focus. W. is not a great eater. We have to practically stand on our heads to get him to eat, and we always need to add more fat to his food, just to increase calories. His CP also causes him to lose weight easier, as someone with CP actually uses 30% more energy than someone who doesn’t. Last week though, I began to relax a little about food. I would get so stressed about it ~ and I honestly think my stress and anxiety about W. eating was affecting him. The past two weeks he has been eating like a champ. Perhaps it is the food, as I am spending more time making food – and not with medical instructions on my mind, but love. Care. The instinct to feed those that I love good food is very strong in me, and I think by burying that part of myself somewhat, it was reflected in the food I was making, and thereby perhaps extending itself to my boy. I could be crazy, but I do believe that it could happen. We have been enjoying pancakes, muffins, and I plan to make homemade pop tarts tomorrow. I have made lemony salmon, quinoa with avocado and a squeeze of lemon, meatballs for the boy, and he has eaten them all with relish. I’ve used fun plates, my china, and some dishes made by hand by my mother-in-law on her potters wheel, making the meal even more special. (W. does not eat off the fine china however, lol)

And if I end the night with a glass of wine and a Reese’s peanut butter egg, then so be it. By letting myself enjoy the process, I think that W. is enjoying the product. I even had some fun with an ordinary peanut butter and jelly the other day, cutting it into a whale shape when serving it with his all time favorite Goldfish crackers.



The weather lately has also been amazing, and we have been taking advantage of it as much as we can, and in a hygge sort of way. Soaking up nature, the sun, the wind. Walking through the woods, even just sitting and enjoying a few minutes on the porch.

The night though has always captivated my little 2 year old. He is fascinated by it. On some of these nicer nights, we have gone and stood outside, looking up at the dark sky, lit here only by a few stars but still, beautiful, twinkly. He laughs, a real laugh, which rings through the quiet as he throws his arms skyward. A perfect moment, for this mom.