Only 2 more days till Mattie turns one!! It seems like this year has been the longest year of my life but then at the same time Mattie is still so little that she cant be turning one already! To celebrate her birthday on Tuesday, we have a day of boot camp plus an hour of physical therapy followed by my attempt to make it seem like she is a normal one year old by getting a birthday cake and letting her smash it all up. It should be interesting since she does not eat table food, never really smashed food, and probably has no idea what it is all for. Her big 1st birthday bash is next Saturday. We are having a pool party! Yes, there will be a million people here since I don’t know how to do anything small! I originally was not sure what to do for her 1st birthday. I thought about just doing something low key with just family, but again I want to do everything as I did Joba and we had 50+ people at his 1st birthday. I am going to make a “Look how far I’ve come table” with a preemie diaper, a collage of pictures from her first year and some of her tiny clothes. It should be cute.
For her birthday we were going to take her to her first Yankee game this Friday afternoon vs the Rays, but Jim talked me out of that with the “all that money plus we would only get to be there for a few innings” so I am taking a half day and we are going to watch it from home instead. I then realize what day Friday is. It is Good Friday. Exactly one Good Friday ago is when we got the news that Mattie had brain damage. She was 19 days old.
This is what I wrote last year:
We have just been lead into the neonatologist’s office. It felt like high school when I was on the way to the principal’s office. There was trouble in our future. I told myself whatever was said, I would not cry. I would be brave and strong for Mattie and Jim. As Dr. W is talking to us, I glance over at Jim. He is looking straight at the doctor. I wanted to reach out and hold his hand but he was sitting too far away. I remember looking out the window and thinking to myself, this is not happening and then saying to myself, there is nothing good about this Good Friday. I force myself to refocus.
We have debated on what to tell people. Do we use the words I can’t seem say out loud? Do we sugar coat this? You have followed us for the last 3 months, prayed with us, supported us, it is only right to tell you what we know…
Mattie has PVL, a form of brain damage. The doctors believe that it happened while I was still carrying her. At some point there was loss of oxygen to her brain. She has several cysts on both sides of her brain. Cysts form where there is loss of brain tissue. There is a 75% chance she will have cerebral palsy and a chance that she will not have any issues. Nobody can predict what will happen at this point.
When I think back to that day it is still such a blur. When we left the hospital the first person I called was my sister to tell her the news. I still can’t remember what I told her, all I know is I said “please don’t tell mom yet”. I then called my friend Taylor who was a coordinator forTampa’s early intervention program. I remember telling her that it looks like Mattie will be admitted into the program.Taylorhad a lot of great things to say and I felt better after talking to her. She was going to be Mattie’s coordinator so I felt some relief knowing we had someone on our side who knew us and our story. The rest of the day (and for a long time afterward), we felt numb, sad, and heart broken.
We have come such a long way from that day. Here is to hoping this Good Friday will be better than the last! PS – Go Yankees! 🙂
Happy Mattie in her feeding chair showing off her leg braces.
Hope For Mattie 