We are in the middle of a Pandemic, and the world seems to be truly falling apart around us in so many ways, I figured it would be as good a time as any to blog after what's it been? Like a year or two? We are still here, 7+ years and going strong. Bert out lived his diagnosis and the kids became teenagers, one graduated the other is old enough to drive, so we have come a long way baby. I started this blog to help write the story of this crazy journey of ALS so the kids could remember. Then all of a sudden the kids were grown and didn't need me to write their memories for them. They made their own memories, had their own story and their own journey with ALS and their dad. So, I just let us live our life and put this blog aside. Bert was never a fan of social media or sharing all our moments with the internet world. It wasn't really the sharing that bothered him, more the time it took away from actually just living. So we ditched Facebook and have just been over here living life and keeping it mostly to ourselves. I figured it was long enough and time to write a little something. I pay for the blog space so why not drop a line once in a while just to check in.
I don't know where we left off but I am sure one blog post is not enough to catch you all up on every detail, I think I can sum things up though and let everyone know we are still here and still obviously killing it. Let's see, Sophia made it through high school during a pandemic, did amazing things with singing and acting, she started driving, got her first job, and got into college! Bert was there front and center for all of it. He did all the forms and loan applications and whatever else you need to do for college. I put him in charge of all that crap and he does what he does on the Tobii. Alex retired from competitive sports. He wanted to go his own way and we said okay. He started Cyber school, he is day time caregiver for Bert and I was able to go back to work which is good because living this long with ALS costs a boatload of money. Bert is teaching drivers ed right now so Alex can get his permit. I already told them both that Bert is teaching the actual driving as well because, well I just can't. The kids have their own relationship with Bert and that makes me happy. He is a great dad and my kids, well I have no words for how amazing they are.
Life is moving along, it's super hard with ALS. There has been so many obstacles, breathing declining, illnesses, the suction machine becoming a constant need. There have been all kinds of ALS issues, this disease just keeps taking and progressing and you gotta adapt there is just no choice. It's draining and hard and frustrating and infuriating. But at the end of the day I am happy because we already beat the odds and the most important things in life are here in this house. We are together and we do our best every day to live life and make each other the priority. I feel lucky. I feel like we have come further than I ever would have imagined. I am so proud of my family, I feel like our team work makes all the difference. You don't need to be able to move, or eat or talk to be a great dad and husband. Bert does that with his mind, his feelings, his advice, and always being there for his kids. They know he has their back no matter what. And I know he has mine. We are far from perfect, but we are perfectly imperfect.
COVID, well that has been a challenge, we take quarantine very seriously, we follow every rule. I go to work geared up in all the PPE. Staying at home has been a breeze, we were used to quarantine. The hard part has been the nervousness of bringing it home from work. As a Nurse it is important for me to do my job and very important that I am very careful so as not to bring germs to my at home caregiving. The turmoil of our country right now is sad and disappointing. The discrimination, racism, and lack of leadership is shameful. Things need to change, and fast. Vote, vote and vote. Look for ways to help make positive change in your community, do good, be kind, put other people before yourself. Teach what is right and just to your children so they can make better leaders and promote peace. If I have learned anything living this ALS journey with Bert it has been that we all need each other and it doesn't matter that we are not all the same. Actually, that is what makes America good, the uniqueness of all of us. We can do better.
As ALS awareness month comes to an end I hope that even though we haven't been on social media or blogging a lot that we have made a little mark on helping those around us become aware of ALS and it's destruction. We hope that people understand that ALS can come into anyone's life at any time. We hope for a treatment, we hope for a cure. We continue to find the positive to give hope to others living with ALS. We Believe, and we are still Fighting ALS.