This past week was Valentine's Day, a holiday that I think is fun at my kids' schools, but that I have no major emotional attachment to, or so I thought. That was before I received the most beautiful valentine ever.
My husband took the kids to school that morning and collected paperwork from the teacher, and so it was not until later in the day, when we switched cars back, that I saw a red and purple correspondence lying on the floor of my van. There was some sparkly paper folded up with a heart sticker in the middle. In retrospect, I wish in some ways that I had waited to be with the card-maker (my 3 year old, as it turned out), before opening. But in other ways, I am glad he missed my emotional reaction. I carefully peeled back the sticker, and inside was a small, red construction paper heart with a photo in the middle. The picture was cut jaggedly into a heart-shape also (obviously done by my preschooler with love). The photo showed him sitting in the sand of the playground, looking down contently at a bucket. It summed up the innocence of the age he is at now.
As any mother would, I then thought about how he would not always be this little and sweet, and how time was moving too fast. But then, something else hit me unexpectedly. I got a rush of emotion about his diseases, and it slapped me in the face, more than it ever has before, that I might outlive him. Yes, I have thought of that before, and I have even blogged about it. But this time, in a way that is tough for me to explain in words, it was different. It was the most I have ever faced the enormity of it all. And I realized I don't know how I could ever be on this earth without my son. My heart hurt and I couldn't breathe. His lack of exact lab findings on mitochondrial disease have left me the ability to ignore reality many days, or to assume the best (maybe he doesn't have it!) But the fact of the matter is, he has something metabolic for sure, and also, we know that he has gastroparesis. His stomach has slowed down a lot lately to the point where we are having to search for more and more medicines to get things going, as well as get second and third opinions and consider drastic measures like gastric pacemakers. We now also give him several supplements believed to increase energy. Take a minute to think about that oddity, as I did. He is in preschool. He will be 4 next month. Usually at this age, mothers are chasing their children, and saying they cannot keep up with them! It is common to hear things like, "I sure wish I could bottle that energy!" And here I am, giving my child a "cocktail" of remedies just so he can (sometimes) get off the couch. I have to encourage him to try and play, as do his teachers, where as normally you'd be telling a child this age to slow down or relax!
So, how to take these sad feelings and reality and make them positive? I think the answer is the same as it has always been for me. Don't dwell on the future. Appreciate every day. And, when grief does want to take over, let it come for a while. It's acceptable to grieve normalcy. It's ok to think about how much you will miss someone when they are gone. And then... hug. Cuddle. Say "I love you"- a hundred times. Don't stop believing in the possibility of a cure.
The precious heart card is now in a frame in my family room. I knew I needed to keep it close and make sure it was preserved. It doesn't make me sad to look at now, as it reminds me of all that is good in my life, of all I have to be thankful for, and of love, in it's purest form. Nothing could be better than that.