Our family experienced a loss this week. Grieving is hard at the best of times. But these are definitely not the best of times.
When Braden was young and first diagnosed with Autism, I, like many people new to the diagnosis, needed a purpose. So, I jumped into raising money for Autism through an annual walk. I named our team “Braden’s Brigade,” as I felt that we had built an army of supporters who helped us and him through difficult times and day-to-day life. Braden’s Brigade was consistently one of the top three in fundraising due to our army’s efforts and kindness. His brigade consisted of family members, neighbors, friends, teachers, community members, and programs dedicated to supporting families and children with special needs. These people helped provide an education for our son and much-needed respite time for our family.
We lived in Colorado at the time and eventually moved to Shanghai, China, and then to Bangkok. In both places, we were surrounded by kind people who gladly stepped in to volunteer for our support army. We purposely moved to places where he could get the services he deserved, and we could get the respite care we so desperately needed.
We’re back in America and “new” to a city we’ve called home for 22 years. And we’ve been doing the work to build up Braden’s Brigade. Here are some of the steps we’ve taken:
- Connected with Intellectual Disability Services (IDS) and got approved to have Personal Support Workers (PSW) come to our home to work with Braden. We have found two people that work a total of 8-12 hours per week.
- Found Oregon Adapted sports (OAS) and organized times for Braden to take a bike ride with volunteers from the group. In the winter, he will get to snow ski with them. Due to COVID, he can participate once per month. Typically, it’s 2-3 times per week.
- Signed Braden up for Parks and Recreation classes two nights per week for two hours each. One is called “Walking and Jogging,” and the other is “Hiking Central Oregon.”
- Applied for Vocational rehab. This program will help Braden find meaningful employment as Oregon is a right to work state. We are just starting this process.
- Enrolled Braden in our school district. He is entitled to services until the age of 21. Usually, he would go to this transition program from 9:00 a.m. to 2:45 p.m. by bus daily. However, due to COVID, it’s all virtual. So, this is not working for our family at this time.
Once COVID is over, our army of support will re-emerge, and we will have a great program in place with him with opportunities for respite for us. Putting this army of support together has genuinely helped us gather a little control over our situation. For the first time since our return, we felt optimistic about many aspects of our move home.
And then a spark of fire ignited the forests in Oregon, California, and Washington.
These forest fires are absolutely devastating. We all have friends or family who have been evacuated and live in fear of losing their homes, while others have lost their homes. So much sadness and grief for so many. My heart hurts for everyone who has been so affected by this incredible tragedy. We are incredibly lucky in our little forest haven here in Sunriver, Oregon. Located in the high desert and surrounded by trees and dried vegetation, we are a forest fire waiting to happen. For now, we have been spared losing our home.
Instead, we lost a life. As I mentioned in a previous posting, Mike’s mom was recently diagnosed with lung cancer. The doctors were unable to tell us her prognosis but predicted it could be months to years. Knowing Mike’s mom, we expected she would be in the “years” category.
But that nasty smoke had other plans. Last Thursday, we received a call that Dinny (Mike’s mom) was having difficulty breathing due to the smoke, which came in like a dense fog enveloping the city. (For our friends in China, the AQI was well over 500 that day) They moved her to a place that could keep her more comfortable. Our assumption was that she would stay for a few days and then be transferred back to her home. Due to a weird lack of communication on paperwork, the new facility did not have our phone number. Luckily, Mike’s sister contacted them and said they were trying to reach us. So I gave them a call to find out that Dinny had taken a turn and most likely only had hours left.
Shocked, I told Mike this news. He quickly got ready to go see her. I asked if he wanted me to go as well. He said, “Yes, but you can’t.” You see, Braden was having a tough night and was extremely agitated. His behaviors were bordering on violence. We knew we couldn’t ask our friends to watch him when he was in this state (although they would have, and maybe our not asking is our issue), so we made the decision that I would stay home with Braden while Mike went to say goodbye to his mother alone. I called Madi, and she quickly jumped on facetime with Mike and was with him until the very end. Mike arrived at about 6:45, and his mom passed away at 7:15 with him and Madi by her side.
Grief is hard. When my mom passed away, I rushed home from Shanghai to be by her side along with my three sisters, brother, and dad. We spent the following week together going through her things, reminiscing, crying, eating way too much, and mostly sleeping. I don’t think I have ever slept as much as I did that week. It was all just so much, and sleep took all the pain away.
Now it’s Mike’s turn. He should have been able to spend this time crying, eating, sleeping, and processing a complicated loss. But this smoke took away the small army we built, and thus, it took away Mike’s ability to grieve.
Monday, we got a call from his PSW saying he couldn’t work with Braden due to the smoke. We basically begged him to take Braden for a few hours so Mike and I could take care of the paperwork necessary and make further arrangements. He took him for two hours. The Parks and Rec activities- canceled. The other PSW canceled. OAS canceled the bike trip. All canceled.
We are back to where we were when we decided to leave Bangkok. Braden is stuck in our house with no understanding of why. And he is sad. He is angry. He is raging. When he is in this mode, it is best I go to another room and stay out of his space. The only person who can work with Braden during these times is Mike. You know… the guy who deserves some time to grieve.
I’m saddened by the fact that I can’t be a supportive wife and take care of my own son. I’m embarrassed that I’m complaining about this when so many others have lost their homes and livelihood. But I think it all boils down to exhaustion. We were tired before. And now…well, I’m not sure there is a word to describe it. Here is an article discussing caregiver exhaustion and an increase in suicide.
As with anything that happens in our life, we know that this is temporary. The fires will extinguish (thank you, firefighters). Mike will have time to grieve properly, COVID will go away (thank you, scientists), and Braden’s Brigade will be rebuilt one person and one program at a time.
In the meantime, we feel the love and support from our family and friends near and far. Our Bangkok troops, dealing with their own grief (which is not my story to tell), have been busily preparing our shipment, dealing with paperwork, and selling our possessions. We found a home for our wonderful Chappy dog as well!
And good things are happening. One of our nieces had a beautiful baby boy a few weeks ago, and another niece is marrying her true love sometime soon.
And today… it’s raining. The smoke levels have decreased for now. We are hoping the rain can help the firefighters as well.
There is hope. Much hope.
Thank you to all of you who have been part of our army. Your continued support and love are felt and appreciated each day as we navigate our life with unexpected twists and turns along the way. We love you too.
To Dinny Sweet: Thank you for giving the world your son whom we love dearly. From you, he learned a love of good music and a sense of wanting justice for all. May you rest in peace.