September 30, 2014: I called my siblings and told them that we had an appointment at Children’s the next day and, “My life may never be the same again.” Let’s be honest, I didn’t tell them this, I cried this to them. Chris said, “It’ll be fine Darc, a year from now we’ll look back at all of this and laugh.” Not so much.
October 1, 2014: Heard the words Menkes Disease for the very first time. I don’t even remember the girl who woke up that morning. The naïve girl who thought you could “fight” everything and survive.
October 8, 2014: We are told, “Yes, TJ has Menkes Syndrome.”
October 10, 2014: We meet with Dr. Angle and his team at Children’s to discuss our options.
October 12, 2014: TJ is admitted to Children’s and we learn through an EEG that he has almost no brain activity on the right side and very minimal activity on the left side. We also learn that he is having subclinical seizures on an hourly basis.
October 13, 2014: We enlist the support of Hospice and meet our beautiful Nurse Jen for the first time. We take TJ home to make “BIG” memories. We kiss each other good night and say happy anniversary.
October 19, 2014: Kendall and TJ are baptized on the most beautiful fall morning at Our Lady of Mount Carmel.
October 19-December 24: “BIG” memories!!!!
*****
Life goes on; it should go on; and as my friend told me as a comfort, “It’s even possible to be happy again.” But that doesn’t mean that we are healed, or that we ever really want to be healed. I don’t know, for me, I just want it all to matter.
*****
On another note, I feel like the thing is, is that TJ is trapped in time for me. He will always and forever be six months old. Does this happen to you? Do you longingly stare at other babies who are the age of yours when he passed away? I feel like that’s part of the thing with the world moving forward around you, the cars driving by, the birthday parties, the life; all of our pictures are frozen in time. There’s the before Menkes, which I hardly recognize, the 3 months of big memories, the “lost” days of shock (honestly, January does not exist in my memory bank), and the now. The everyday knowing that someone isn’t here, that it’s just not quite right, the how can we possibly take a family photo when he’s not going to be in it, the yea, I can be happy again, but can I ever breathe again, can I ever wake up and feel like today is the BEST day ever, or is this just what it is, is it always a faint knocking, a silent memory, a broken piece of my heart?
*****
I love you little guy! Let your faith be bigger than your fear.