Welcome to World Down Syndrome Day, crazy socks and all. We spent the day together with Bradley, all while also running through the List of things that need to be done around the house. Of course, this year is quite unique and will be remembered as the year of the COVID-19. The kids have been out of school a full week already; because he has Cardiac and Pulmonary issues which makes him the most vulnerable, Eric has been home since Tuesday. Bradley is also immune compromised which puts him as a close second in risk. Things have been stressful as I watched a huge piece of my heart walk out the door each day to be surrounded by who knows what, and come back in to the house potentially giving another huge piece of my heart what he might have caught. A huge load lifted when his work told him he had to stay home. Another week and no one shows symptoms and I might even be able to breathe again.
The world has gone crazy and people are scared; feeling completely out of control, people have jumped to hoarding toilet paper, disinfectant wipes, and hand sanitizer. We watched from afar a bit flabbergasted, not sure how an upper respiratory disease needed that much toilet paper...but then, people will panic and get what they can and hunker down for the duration or they will be oblivious and not care about the rules and run around playing basketball in the neighborhood or drinking at the beach. Things have changed drastically and completely. The world we knew is gone, the new normal will be a hard pill to swallow for most. For those who have never worried about contact from the wrong person destroying your world...well, crash course friends. Now you know what we've always feared.
I know you're scared, but let me bring you some light and maybe a map. Doctors are our friends, our first line of defense and following their guidelines will lead you from the dark. We will get through this and when we do, we will come back out to the world and be grateful for the chance to meet a friend for coffee, or hug parents that are too far away to see right now. By following the precautions we are staying home and flattening the curve allowing our medical field to stay ahead of this and give us all a chance to survive should we be one of those that is affected in the worst way possible. Brilliant minds who have been preparing for this and have the ear of the ones in power have a plan. Prayer is a great place to start and meditation is a great way to end your day. Now is the time to find out who you are and set yourself down a path that leads you to where you want to go. The material things are suddenly less important and our connections to people - friends and family are the truly most important things in our lives.
With the world seemingly falling apart around us, it may seem weird that I still wore my crazy socks in order to celebrate the beauty of an imperfect genetic glitch that gave my beautiful little boy 47 chromosomes, a heart full of love and a soul that is purely created. For reasons I will never understand, God gave me this sweet boy to raise and in the process, this little boy has taught me how to be a better person, how to want the best for others, how to always try to find a way to help. My son has taught me empathy and kindness. I think I was a pretty good person before; I wasn't spectacular, but I wasn't terrible. Having Bradley; being given the gift of having him in my life, I have realized that I am determined to be better than I was everyday. Everyday I strive to add something to my development of me that makes me someone Bradley is proud to call his mom.
Our days ahead will be a huge test as he will be out of school until May. We will be trying to change his world up with a mighty shake to get his therapies to happen through Zoom and hope that he will take to the faces that he adores through the computer screen. Considering how shy he gets on Facetime to people...I am not encouraged, but I also refuse to be completely discouraged. We will get through each day as it comes, he will drive me close to the edge of insanity and then catch me just as I teeter on the brink, bringing me in close and reminding me why I adore this little boy more than the sun, moon and the stars above. But ours is not the only house this will happen in, this will be happening all over as patience is tested and a new normal is learned.
As for me, I will continue my protein shakes and my fizzes; all my health builders that have helped me find the energy to face each day, even as Bradley keeps flirting with fewer and fewer hours of sleep at night. I am determined to be a better momma and to meet his frustrations with less of my own in order to level the playing field for him.
We will be tested in this time over and over...but we will get through it together. I am here for you if you need someone to talk to, if you're scared, or if you need a friend. Don't be surprised when you suddenly get a message from me, I am trying to reach out to as many as I can; just to check in, to let you know you are on my mind and I want to know that you're okay. In between, I am scraping down the hall bath getting ready to paint it - making that more presentable for company, because someday people will be back.
Be safe. Be mindful that what doesn't affect you might be carried through you and hurt someone else, so stay home. If you are lonely, call someone, they probably are too. Relationships can come out of this stronger than ever, we just have to put forth the effort. Take care of each other, we will get through this together.
Happy World Down Syndrome Day Friends! May next year's celebration be during much better times.
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