The week or so after the Diagnosis- September 2020

The following week was probably the hardest this far, trying to figure out how to cope with this news, answer questions, make the thousands of phone calls to different doctors and therapists for appointments and follow-ups, adjust to our new routines and educate ourselves as much as possible. A LOT of people were reaching out trying to help and share any info they could find on the internet but I couldn't even find the courage to click the links and read. I just felt immediately nauseated and could not stop crying long enough to see anything clearly. As soon as I thought I had a grip I would lose it all over again. I was numb at one point, probably for a few days, literally and figuratively. I didn't cry constantly only if the subject was brought up and I actually could not feel my face for awhile.. probably due to the amount of tears shed. It was a hard, hard week. I don't think I can really find the right words to describe it yet.

We had so many visitors and so much support it was truly amazing, it definitely helped us keep our minds off things with the constant visitors and well wishes for Ax man.

We are so thankful for the best family and friends we have; my mom has been able to stay with us the last four weeks to keep an eye on the house, dogs and Ryder (plus handling his e-learning), one of my sisters drove up from Georgia with my nephew to give Ryder some distraction and to help us get a hold of our lives, my other sister was over every day and for all the appointments giving Axel all the lovins and emotional support we need, and my BFF has been my personal assistant and therapist through all of this. Lucky for us majority of our support team are real life nurses too (haha). Colby's family, of course, has been a great support system and has been helping with house chores and keeping Ryder occupied as well.

Sometimes I get myself so wrapped up with everything going on with Axel that Ryder gets the back burner and I feel terrible once I realize. He is just the most easy going, chill kid that I hate to say it's easy to let it happen. He's just so good at going with the flow and being my backup man! I hope one day when he's older he understands how appreciative we are of him being the BEST big brother to Axel.

I'd like to say things have gotten easier for us to handle but we know that would not be the truth. I may not cry all day every day anymore but we have good and bad days. Some days I feel very accomplished like we did a lot to help Axel other days I feel like complete trash, completely exhausted and useless. I will say every morning I wake up I have about 3 zen seconds to myself before I feel like someone has dropped a 10 pound bowling ball directly onto my chest. Maybe one day that pressure will get lighter or become nonexistent but I know it won't be anytime soon. We have the longest scariest road ahead of us but no matter what we are going to fight for our Ax man because he DOES deserve that, nothing will hold him back!