Pilot

It's been almost a year since I last saw Robby on this earth. It's hard to breathe thinking about it and it's been weighing heavy on my heart to share with others my experiences. The good and the bad. It's my hope to provide a window into not only the grief that is a constant presence in my life, but to also share the joys that Robby brought to me while he was mine and the joy that God still gives me through other avenues.

I think it's so important to share your burden with others. I think it's even more important to share your joys. I'd love for this blog to be a source of comfort and inspiration for others regardless of their situation. My only hope is that those who read this will appreciate my "extra-ordinary" life and the lessons that I am learning along the way

Our Beginning

I was made to be a Big Sister. I'm naturally loud and bossy. Robby was patient and quiet. To say that he was my best friend would be a stretch. He was my brother. My annoying and wonderful little brother. As a Big Sister you find that you are a combination playmate, confidant, and protector.

But before you come to represent all of those things you first you get to experience the wonders of The Baby. Robby was and still is the most beautiful baby I've ever seen in my entire life, and I say that without bias. He really just was that beautiful of a baby. He had a beautiful tuft of light brown hair on his head and the most amazing caramel colored eyes. They were huge and showed every emotion he ever had. My favorite thing about him though was how soft he was. His was silky in the way that only a baby's skin can be. I would watch him sleep the whole time touching his little toes and fingers, but my favorite was his smooth fat little knees. They were so different from mine, already scarred from five years of running and, consequently, falling. It was one of the first times I remember being jealous of Robby, of his fat little knees.

A favorite story of my family's used to be about how once I, jealous of all the attention the new baby was getting, suggested to my parents that we "take him back to the hospital." Just return him. It used to get a lot of laughs. We don’t' tell that story anymore. All it brings is an overwhelming feeling of grief, guilt, and mortification. I had no idea, never once did it cross my mind, that I would one day have to take him back to the hospital. I never thought that one day I would take him back to the hospital and leave without him.

September 2013

It was the worst week. I made it home right before we airlifted him to Children's Hospital in Dallas. I caught him less than an hour before he was put into a coma that I would never see him come out of again. I hate thinking about it, but it often surfaces in my memories. During our week at Children's I found myself again touching his toes and fingers while he slept; a gruesome parallel to the beginning of our life together. This time his feet were gigantic and his hands had finally caught up to his height (nearly six feet tall and still growing). His knees were no longer smooth and soft. They were rough and surrounded by new teenage muscle. The last time that I saw him alive and well I had told him that his baby hands (something I used to give him a hard time about) had finally caught up to him. He smiled so proudly. Compliments from me weren't a frequent occurrence. That's one of my biggest regrets now.

We didn't find out until much later what had taken him from us. It was HLH, a rare and horrific disease, but it hardly mattered to me after the fact. I couldn't find the energy to care about anything. I dropped out of school. Stopped talking to most people. I couldn't relate to any of them. Who else had lost their little brother the way I had? There were people who tried to comfort me with stories of lost grandparents. They only made everything feel worse. How was I to relate to the grief of the most natural kind loss in the world? Grandparents live at least three times the amount of life that my brother had. Nights became a time to relive every hour in that hospital. My husband, Brian, falls asleep practically on command. He was my rock in his waking hours, but the hours I spent alone became unbearable. Pictures of Robby had to be tucked away. To look at his sweet face was to send a stab of pain so forceful that I felt I might fall. I began to wish I was dead too. It wasn’t fair to be the surviving child, the less deserving child and still living.

I don’t know where the time has gone. I don’t know how it’s possible that I’m sitting on the doorstep of the anniversary of the most awful time. I hate that the world has moved on, but I so greatly appreciate the outpour of love that has surrounded us.

Somehow life has managed to be okay since then. I’ve had a lot of really great moments. Brian and I moved to Texas. We finally had our “wedding”. We shared some really great moments with our family and friends. I missed Robby the entire time. It wasn’t complete without him, but it was still a blessing. I’m enrolled back in school and looking forward to finishing. I’m looking forward to starting my own family. It doesn’t feel right that my children will only know their Uncle Robby through pictures and stories. He would have been the most wonderful uncle in the world. But I’m blessed to be living my life right now with Robby. He’s still my brother and now he’s my angel too.