To D from This D-Momma:
You entered our life on December 17, 2009 and changed our lives forever.
Actually, you showed up long before we realized you were there. You zapped his energy. You made him sad and irritable. You made him anxious to be away from me and his daddy because he knew something was wrong. He was lethargic, seldom smiled. You stole his joy. You made him sick. So sick, in fact, that we were afraid. You made doctors believe he had organ damage and they were dumbfounded that you had not succeeded at that. For a time, you took over his body completely.
On December 17, 2009, the dx came. You were there in his body, and you were there to stay. And that’s when we became aware of the war we were facing. But boy, did you choose the wrong family to pick a fight with.
You chose Ryan, the smartest, most regimented and habitual and literal five-year-old ever who possesses a courage and maturity that some adults can’t muster when faced with a lifelong challenge. It’s hard to discourage him or trip him up. He is a tough competitor. He will not go quietly.
But I wonder how surprised you were to find out that you were not just battling Ryan, a then five-year-old.
You were also battling Ryan’s Daddy, Jason, who forever researches for new and innovative technology and keeps up with the progress being made toward a cure that will rid you forever along with being a great d-dad always involved in the dailies of Ryan’s care. Daddy is his provider, from finances to insurance, and his strong protector.
And you picked a fight Ethan, his big brother, then 10, who eagerly wanted to learn about you so he could help defeat you. He wanted to understand how you worked and be an active participant in giving shots, treating lows and working off highs with activity. And when we are not in the safety of our home, he is an avid defender and encourager.
And you also were going to be up against Aaron, then 4, his baby brother who would be very conscious in supporting Ryan in his diet, not eating when Ryan couldn’t, being patient with the early on rigid schedule and always asking if Ryan “had enough carbs for that” and was and still is the constant comic relief when dealing with you made life stressful.
But you also met your match with me. I am stubborn. I am determined. I am a being of structure and order. I am a fighter. I am that mother bear who will protect and defend her bear cub to the death. I am determined that you will NOT steal his childhood. And I will keep you under healthy control for Ryan without making him feel that you stand out in his life above everything else.
Let me tell you about the lifelong war you have with the five of us —
You may have entered our life . . . but you will not control it.
You may interrupt our days . . . but you will not mandate our time.
You may beat us down . . . but we will get back up.
You may be able to discourage us . . . but you will not steal our joy.
You may win a battle . . . but you will not win the war.
You may be with us all the time . . . but you better get use to being dragged along for the ride.
We will go to ballgames and eat cotton candy. We will go to birthday parties and eat cake and ice cream. We will go on vacations and swim in the ocean all day. We will still eat pizza and pasta on a regular basis. We will Trick ‘r Treat. We will make sugar cookies with home-made powered sugar icing at Christmas. We will have candy in our Easter baskets. We will let him do all other things that little kids do even though it requires a little more work.
And nor will I. Yes, you picked a fight with the wrong boy, with the wrong family. You may always be a part of him but you will never have him.
If necessary, I will not sleep. I will regularly do sugar checks. I will figure out problem foods. I will carry a meter and snacks and juice and icing with me at all times. I will forever crunch numbers. I will be vigilant with his activity. I will educate others so they will know what to do and how to treat him and YOU.
And he will have a good life. A happy life. A full life.
And we will see it though to the end . . . all five of us . . . Together.
And in the end, we will be better, stronger, because of you . . . in spite of you.
So buckle up and enjoy the ride!