In the spirit of the New Year, and for my own peace of mind trying to get revolving thoughts out of my head, I decided it was time for a Vogel update... After 9 years of marriage, 3.5 years of motherhood and the wild unpredictability of life, I've noticed most things seem to blur together now. When I reflect back on any given year, I tend to only recall a few highs and lows and keep pushing forward. Each year flies by faster. I hate that. But in the words of Kermit the Frog, "life is a series of meetings and partings. That is the way of it." Smart frog. 

Reflecting back on 2022 was hard. As a whole it was probably the most difficult year of our marriage, parenthood, and my health and emotional well-being. Don't get me wrong, there is always joy to be found. We had a great family week in Sandpoint this summer, took our annual beach trip with our favorites, had a Vogel wedding and celebrated with family, went razor clamming in the brother's matching trailers, (presh) and we gained 2 new family members in Frankie fishy and our delicious Golden Retriever Max! Nala still isn't sure about these decisions. Nonetheless, these were the big highlights of the year. In reality though, I spent most of my time keeping schedules for Jonah, regularly making calls to see what his position was on each waitlist for therapies because early intervention ends at age 3, trying to find more answers but also living for each day, keeping up with typical life duties, and advocating for special needs awareness.

 

Let me just pause on that for a second to say resources for the disabled community are pathetic. Our society's inclusivity and knowledge is also pathetic. I'm regularly outraged at the lack of resources in this day in age for my son and so many others like him. Why aren't politicians and influencers screaming about these issues instead of trivial 1st world problems and gender pronouns?! Pronouns, really? Like we don't have enough going on, can we just leave those rules alone please?... 🤦‍♀️ Disabilities are so common and deserve so much more attention, support and acceptance. So yeah, to not get too hot and probably offensive, 2022's been a doozy! 

 

Back at the old homestead, Matthew and I are currently still dealing with the results of PFAS chemicals in our well water which has required us to install a filtration system, but that's a story for another day. Or never. I also started Ocrevus, (a different MS treatment) as a new lesion in my brain popped up for the first time in 11 years. A right frontal lobe beauty! Not a bad run, right? We've also been stuck at home as Jonah's been sick a lot this year, (preschool is bananas) and we've had to miss out on trips to catch fish, camp and see family and friends because of it. Thankfully my parents are close by and so helpful, but it's hard to describe how much extra preparation goes into setting Jonah up for success without us close by for any extended period of time. I can usually average a couple hours of getting chores done or running errands before I have to get back to him to keep his routine on track. Luckily he lives for Grammy games and rides in Grandpa's big truck. Matthew and I hope to get away for a night in 2023 to have some relaxing and unrushed time together for the first time in 3 years. Very lofty, but also very important as all parents with young ones know. All that to say, life’s been quite a blur from our perspective.

Far and away the most memorable moment of 2022 was in May. Just after his 3rd (🚛 trash truck themed) birthday, we received Jonah's Autism diagnosis. Level 2- needing substantial support. Finally after 3 years, we had an answer to one of our endless questions. By this point it was no surprise as Autism was first on our radar after Jonah’s 2nd birthday, but it was still profoundly relieving to have that clarity. And profoundly overwhelming. Still, we wiped our tears, hit Seattle Children's gift shop for a new stuffed animal 🦩 (obviously) and another new journey began. 

 

Turns out up to 70% of autistic kids can have GI issues on some level. Jonah's is severe as he's had a gtube since July 2021, and is completely dependent on it. Sorry to say no progress was made with eating anything orally this year, (but I don’t have to share my Crumbl cookies!) Jonah's situation is made more complex as he has motility issues that require meds, but Autism also plays a role in the sensory department. We're slowly starting to unravel the "why" behind some of his different struggles and the answer is no longer simply defaulted to his prematurity. Of course, that doesn't make things much easier but I do feel less crazy which counts for something. 

 

Jonah's developmental preschool teacher is so amazing and has been everything for us as we've dipped our toes slowly into public school life. Shout out to our Mickey & Allie! (It also helps that his Principal is Grandma Ann's baby!) He does receive some therapies at school but with his limited time in class each day and his level of needs, Children's Village is the best place for him to succeed. Unfortunately, he's still stuck on waitlists for ABA therapy, OT, Speech and Behavioral Health. It's so incredibly frustrating finally knowing exactly what he needs to make better progress, but still not being able to reach it. It's that never ending hopeless feeling of waiting while crucial time passes and he falls more behind according to the world's standards. If you have that child who doesn't fit neatly inside the invisible box that was constructed for them, I see you friend. Hugs. 

 

To those we didn't get to see much of in 2022 or spend quality time with like we would have loved, we're sorry. We're simply just too tired in the season we're in. We love Jonah more than we could ever imagine and he’s our priority. He’s the best thing ever in life. Part of that though, is being honest about the reality and challenges. Here are a few: Potty training still isn’t happening in our house. Jonah continues to sleep in his crib for a variety of safety reasons. His level of independence isn’t close to that of a 3 year old's. Our schedule revolves around feeding times and routines that have to be kept a certain way. Regulating his body physically during big feelings is difficult, sometimes resulting in self harm or aggression, of which only a select few people in our life have witnessed. It's not really possible to get up and out of the house with much spontaneity! But Jonah is genuinely so very happy, hilarious and outgoing which we love so much about him! He also has Autism, which means difficult moments in each day, gross and fine motor struggles, speech delays and overstimulation. I'm so thankful to those who see and understand that reality and love Jonah just the same. We appreciate you so much!

 

Every year of Jonah's life we're more thankful and blessed to call him our son and thankful he's here with us. Autism is also all consuming. I'm so grateful I was able to step away from work to be a full time mommy, caregiver, and advocate for our sweet boy. None of which could happen without Matthew. He's still here, being our crusty rock and an involved Dad, and taking life's kicks to the face right alongside me while ensuring there's still humor in the chaos! As this year comes to a close, I’m starting to accept the fact that we can love Jonah more than life AND take quiet moments to grieve some of the normal things that aren't a reality for us. We often watch kids much younger than Jonah fly right by him in different areas of development while his progress remains very slow or has some regression, and it's hard to acknowledge. But I know everything will come for him in time like it always has, and whatever the end result, he's mine.

 

I wouldn't change one thing about my baby. I know him inside and out; every little freckle, smile dimple, and thing that makes him tick. Like the repetitive phrases he repeats over and over that we have to repeat back perfectly or he starts from the beginning again. It’s how he communicates and bonds. Or his need to constantly move, be in water, line things up and then send them flying, his sideways eye glances as he spins and SO much more. Special needs families don't want sympathy or an "I'm sorry." We all have our own struggles in life to get through. It's not about pity. It’s about education, resources and understanding to give our kids support instead of judgment. To ensure that they know they are equally valued members of this world.  Jonah is one amazing dude. He's perfect. He's fearfully and wonderfully made and we're very blessed God chose us to be his parents. He's our miracle, this year and every year after. 

So however you're celebrating and whoever you're with, know that we love and miss you from our little corner of the world. We'll be happily flapping and stimming into the new year in true Jonah fashion!

 

Happy New Year friends! Cheers and blessings to you in 2023.  ❤️