March 13, 2017 will be a day I remember for the rest of my life. It’s a day that no parent ever wants to remember, let alone live through. The day where doctors told us news about our son that I was not prepared to know.
The last two weeks have been full of emotion. Anger, fear, confusion, determination, but most of all, overwhelming sadness. Sadness I did not know I could feel – bring you to your knees while your husband tries to hold you up – kind of sadness.
However, through the most awful, turbulent time of my life, I am choosing to see the beauty that surrounds us. I cannot thank each of you enough for reaching out to Cleon, Alex and our family. One of my very best friends, Kim, came to visit us in the hospital, hugged me and was just there for me when I thought I might collapse. My best friend, Heather, organized a meal train for us, and so many of you have signed up or brought meals to make sure we are eating in between giving our son injections, working, and “trying” to sleep.
And when you bring meals, you aren’t just bringing us meals. You bring us flowers, and cards, and breakfast, too. Not only do lasagnas and trays of spaghetti fill our home, but so do salad, rolls, girl scout cookies, muffins, coffee, fruit baskets…you even bring hand-painted crosses from your kids for Alex so that God can watch over him and make him better.
But above all, you have prayed for him. I can’t tell you how many people have reached out and placed him on prayer cards, walls, lists…have lit candles for him or said a rosary or knitted a prayer shawl and had it blessed so that we can wear it when we pray for him. I feel overwhelmed by the love that surrounds Cleon, Alex and I.
Also, thank you for helping my parents, who have stayed countless days and nights to help us get through this extremely difficult time. We have no idea how we would have managed without them. And my husband…that is for another post, but I fell in love all over again. He has done things and kept us going when I had absolutely no strength left. And he has encouraged me to write again, to document this time for our son so that we can remember all the challenges he faces and how he overcomes them.
I can’t begin to describe how much our lives changed in one day. And how each day since, our son has continued to power through…going through things most adults don’t ever have to endure.
So here is the Hallelujah! We had good news from our doctors report yesterday. The medicine Alex is on is healing him. So thank you – to each and every one of you that supported us – so that we could support him and lift him up when we thought we wouldn’t even be able to stand. We will be forever grateful to all of you.
We have a long journey ahead still, but we are over this important hurdle, and we couldn’t have done it without you. Below is a picture of Alex at the hospital before his meds started. They have made him grumpy, but now that we are weaning him off, we’re hoping to see this smile again soon.
Thank you for surrounding us with so much beauty in the middle of our storm. Alex is pure joy and I hope you all continue to remain in our lives to watch him grow and thrive.