We Can Do Better!
It’s funny that it’s been 11 months since I’ve officially posted a blog. I learned through my boys being diagnosed with Duchenne Muscular Dystrophy that writing is therapeutic for me. So I have been writing, however through other forums than this blog. It’s been a few bullets in my notebook about my current stressors or why I hate Duchene or what I’m grieving. It’s also a mean email I want to send that I write out and then send to myself or delete. Today I was mad, like really mad, because my kids were being the ultimate brats. Crying over stuffed animals, Dunky promising Caleb a trade that he never intended on following through with, threatening each other to break their favorite toy, or throw their ipad at each other. I took an envelope off the counter that I intended to slam down on the granite as hard as I could because I knew it would be loud and get the attention of my kids. I should have paused and written about how annoyed I was with my emotional children, because the envelope move back-fired. I caught my knuckle on the counter instead and ended up with a black and blue, swollen finger and tears myself. So when in doubt……turn to writing.
Today I want to write about this inaccessible world we live in and challenge our society to do better. What if we lived in a world where you assumed the worst so that we met people at the appropriate level? What if we assumed people couldn’t hear, speak or walk? This sounds hard, I know. I imagine we would approach people with a large smile and figure out what they need from us in conversation. I imagine we would give people the benefit of the doubt.
If people gave me the benefit of the doubt, I bet the following would happen:
- People wouldn’t stop to tell me my double stroller is too large to fit in their small restaurant or not permissible in the airport.
- People wouldn’t look at my 6- and 8-year-old in a stroller and say “Are you 4?” bur rather look at my beautiful boys and say “How old are you?”
- People would fix their broken handicap accessible doors that make entry into their establishment otherwise impossible.
- People would install a handicap parking spot at our favorite local establishments when we ask.
- People would give grace when a full on fight breaks out between my boys because take a corticosteroid EVERY SINGLE DAY that is enough to make one go bat-$hit crazy after just a few days.
- Medical appointments would be accompanied with Social Workers to help me and my boys when they tell us hard news.
- People would assume any additional ask of me or my kids is the last straw before a major break down.
- People would assume we are juggling more than is feasible so when a deadline is missed, it’s forgivable.
Wouldn’t it be amazing if people Gave Grace and not Grief? That doesn’t mean you can’t voice concerns, but it means you assume that everyone is doing the best they can and instead approach any problem from a space of love and kindness. There is SO much more room for love in our world.
It’s amazing to think we have been waiting for more than 6 months for the school district to fulfill the role of a Special Ed Assistant (SEA) for Caleb and Dunky. We have been going the ENTIRE school year with an IEP that is not fulfilled. I listened to a podcast recently that said, “Just get it written into the IEP, because then they are legally bound to do it.” Apparently, that doesn’t matter because our SEA minutes are written into our IEPs, but we have no coverage. Thank the Lord for wonderful and committed staff at Our Lady of Peace for going above and beyond to fill the gap because they care, because they know what my kids need to be safe in school. But that isn’t the right solution, nor a long-term solution. We can do better, can’t we?
I’m nervous for the next few months. We have so many activities, some good, some hard, but all things that are needed to ensure my boys have the best life possible. Major “highlights” include:
- Nearly 2 straight weeks of work travel for me with much more on the horizon
- A special day with mommy due to Caleb and Dunky’s school ski trip that they can not attend
- A week with Minnie and Papa in warm weather
- Dunky’s 7th birthday
- Dunky at Neuromuscular appts at the U of M
- Caleb at Cardiology appts in MN
- 2 separate trips to Nationwide for Neuromuscular at Nationwide Children’s (Columbus, OH) including psychiatry for Dunky and Growth Hormone testing for Caleb along with Neuromuscular appts
- Caleb in numerous Orthodontist appts
- Duchenne Community Conferences
It’s not all bad, it’s just a lot. So many stressors and upon every outing we experience numerous encounters where I think our world can do better. I think if we were given the benefit of the doubt, it could save tears and emotions.
We are thankful for our abled bodies to take care of our kids that need our help. It is my life mission to help this world embrace people with varied abilities. It’s hard, but I’m glad God put me on earth to help with this mission.
Feb 2022