My heart is aching. My emotions are high.
Max had a really good weekend and a good Monday and Tuesday. I typically get up each morning before everyone else and head to work. I posted Wednesday morning without looking through my Facebook newsfeed. I noted that Max had been having good days. I got a call about 10:30 - he's struggling. Our nurse noticed that Max's O2 levels were dropping into the 70s and staying there - his normal is low 90s and dips into the 80s but goes back up. She administered some O2 and he got back to his baseline and had a good night. We are watching him to make sure nothing is going on. I received a note about lunch time yesterday that mentioned what a sad day was for the Krabbe community. We lost two beautiful kids - Addilyn and Nicholas - to this horrible disease. I hadn't seen this - it was a shock... I closed my office door and cried. I just couldn't hold back the tears. My heart is aching for their families, and it hurts even more to know what other parents within the community have already gone through and still do but also....what is in our future. With every loss...I get a flashback to diagnosis day - there is nothing we can do. Take him home and keep him comfortable. I don't know how we are going to do this...how I will have the strength to continue to move ahead. I don't know - but I also know I'm not the first to go through it. Others have survived and live each day the best they know how. I admire their strength, their courage and their grace. I continue to try to live in the present the best I know how. But it is easier said than done.
This is not the first time that Max has been having good days and then struggles when we find that another Krabbe child passes - there is a significant change. With Hannah, Anna, Parker, Lauren, Addilyn, Nicholas, Maximus...and others. It is as if he can sense it. Maybe I'm reading too much into it, but it has been consistent. I think it hurts a piece of him too. I think he can sense it.
I got it together after crying in my office and went through the rest of my day. We are having celebrations, games and meetings at work this week. I hope I played it off and no one recognized my sorrow - I try my best not to bring it with me. I got into my car on my way home and sobbed. It was a gloomy day with lots of storms. I played sappy songs to try and get it out of my system before I got home with my kids. I try to be brave for them and try to carry a positive presence for them...or they will know something is up. Something that is greater than they can handle.
I don't know what the signs mean or if I am superficial. But I truly in my heart believe it was a sign - that those who we have lost are ok. That I'm going to be ok. That Max, Emma and Josiah will be ok. It certainly doesn't make anything easier or better here on Earth but a hope.
I got home and clung to my kids. I hugged Max and played with he and Emma. Through all of this, I'm so blessed - to be with an amazing husband who has been through a lot with me already, let alone this. To my two beautiful kids who I wouldn't trade for anything. There is so much love and support that continues to surround us. Friends, family, co-workers and complete strangers who are helping.
But the Krabbe Families all over the world who we have connected with... who continue to push and advocate - no matter how much pain they re-live, they push on to help future kids and families - they are heroes. They are there to support all of us who are still going through the fight with our children and they stand together and hold strong for those who have lost their children. They are so open to helping others. The strength, courage and grace that is shared is remarkable. We are all family by genes - I would be lost without them and their support and openness. They inspire me to live each day to the fullest and continue to fight for Max. And fight for future kids. Thank you. I can't always express how much it means - but it means a lot.
I have found that I have the courage to move forward and to live in the moment with my family and friends. Each and every day I have with everyone is a gift. Each and every day I have with Max is a gift. There is no promise of tomorrow. But I've found the courage to live for today.