Bittersweet...

There are so many things that full under that category for me right now.

It is bittersweet that the FDA has officially approved the first ever drug targeted for children with Spinal Muscular Atrophy Type 1.  Less than a year after my little girl was diagnosed with it. She was so close to getting it. We just didn't know. And by the time we did, there was so much damage I don't know that the drug would have made much of a difference for her. Yet, I will always, always wonder. If we had held out hope, if we had tried. Would she still be here?

For the most part, I try not to focus on that. The fact is, my daughter is dead. Nothing can be done to take away that reality. I don't have a time machine and life doesn't grant us do-overs. However there will always be a part of me that wonders what would have happened if we had known she had SMA earlier. Would we have done a clinical trial? At the point we figured out the diagnosis, Millie's disease had already significantly progressed. She was in trouble from birth, and no one knew.

It's easy when you're grieving the loss of your child to become angry. My anger was never focused toward God. I was always grateful to God for the gift that Millie was. But sometimes I go back and I think, "what if they had noticed things at birth like I did?" or "what if they had SMA on the newborn screen?" These thoughts don't often haunt me but sometimes they are very prevalent. Sometimes I'm angry with the pediatrician that examined her after birth. Others I'm angry with my former PCP (who has since left the state due to another job opportunity) for simply calling her a "fussy baby," which she wasn't. The reason she was fussy was because she was aspirating.

Now that we have another child, the bittersweet moments continue.

Lydia Renee was born on February 27. She weighed 6 pounds 8 ounces. Immediately from birth she started screaming. She also latched on immediately. The contrast between both newborns was undeniable. Lydia was born much stronger than her big sister.

She has had some acid reflux, but aside from that she appears healthy in every way. Now she is past the age her sister was when she died. She weighs more than her sister every did. All of these are good things. My heart is elated, but I'm also incredibly sad.

I'm sad Millie died. I miss her more than I ever thought was possible. We are now approaching Millie's first angelversary. I don't know that life has become easier. Maybe the pain isn't quite as excruciating as it once was. My husband and I know it will never go away completely. The fact is, we will always miss her until the day we join her.

Unfortunately, my health has also been on a downward spiral in the days since Lydia's birth. I do not have the energy to do much at all anymore. Much of my days are spent in bed. We finally found a geneticist more locally who may have an idea on how to test for Mito. Hopefully this will lead to more answers and a better approach to my care. Clearly I know that Mito does not have many effective treatments or a cure. However, I really need a better quality of life, and that is my goal at this point in time.

Justin, Lydia and I are headed to the Symposium on Mitochondrial medicine in Washington very soon. We are looking forward to seeing Mito families and learning more on how to approach my care.

I am in a constant state of survival mode and autopilot. My disease has essentially kept me from living life. Lately it feels as though I merely exist. The goal is that I can find a way to be a little more functional and comfortable than I have been previously.