2 Years Later

Exactly 2 years ago to the day, Jim and I were told I would have to live in a hospital until Mattie was born. Just typing this out makes my heart hurt a little. We were devastated. We kept looking at each other wondering how this happened to us, what would happen to Mattie, how were we going to get through this? I have re-read my carepage blog a few times since then. Even now, 2 years later, I have no idea how we did it. I chalk it up to courage, faith, and an amazing support system of family and friends, but it was not easy. I do not wish that experience on anyone.

For those of you that started to follow our story after Mattie was born, it was a rocky road to start with. My water broke at 17 weeks pregnant. We were told several times that we need to have a late term abortion. Obviously that was never going to happen, so I went on bed rest until Mattie was born. Initially we thought Mattie was going to come at any minute, but she surprised us all. Once I was 23 weeks pregnant (6 weeks after my water broke), the doctors finally put me in the hospital since Mattie would be old enough to save (viable). I lived in the hospital for 55 days. Each day never knowing if that was going to be the day Mattie would be born. She had a 12% chance of survival. Mattie was born 92 days after my water broke. It was a miracle! She came 9 weeks early and was 3 pounds 14 ounces.

5 Days Old
17 Days Old
17 Days Old
Last Weekend

Two years later, do I regret our decision? Will Mattie regret our decision? The latter haunts me daily. Tonight I held Mattie and we watched Baby Signing Time. She was signing along with the movie and occasionally would look up at me and give one of her million dollar smiles and I know I have no regrets. The past 2 years have been a journey we never expected to be on, but we are here and doing it, mostly with a smile on our face. Mattie has taught me more about life in her short time than I ever thought was possible. Miracles do happen. Maybe Mattie is not perfect, but who is? She is our miracle. Everyday holds the possibility of one 😉

With hope and love,


In another post I wrote I talked about the moment of acceptance. “We had a choice and we had time to accept our choice, no matter the outcome.” I accepted that things were not okay with Mattie a long time ago, but every now and then… it hits me… again.  I am beginning to think that the sadness of what could have been will never really go away. It just gets buried deep down inside and at any given unexplained moment it just pops up and says “Hi, I am still here”.

It happened at the OBGYN office yesterday.

As I walked into the office, the doctors have a wall full of birth announcements and cards. I scan it quickly and notice that the thank you card we sent a year ago was still posted on the board. It seems so long ago that I sent that card. So much has happened since then. I was taken to the same exam room where I was tested for leaking amniotic fluid at 17 weeks pregnant. This room just happens to be next to the office we went into when I was 20 weeks pregnant and were told I had to go to the hospital for additional testing since I had no fluid. My eyes started to fill up with tears. I had to tell myself to get a grip. I was surprised by how emotional it was to be back. Deep breaths… Deep breaths. I am not kept waiting very long when my favorite Dr walks in. It was good to see her.

I was looking for answers to a question that I knew had no answers. I was looking for some direction. The biggest unanswered question in my life, why did my water break at 17 weeks pregnant? Of course I asked this question more than several times during my 59 day stay in the hospital, but now that I had more time to focus and reflect, I needed an answer and a better answer then “we don’t know why”. Of course, I did not get it. They don’t know why. I knew that before she even said it, but I had to ask again.

I had never told my doctors about Mattie. I decided that I was going to tell Dr. R today. As she is asking me how things are, I get tears in my eyes and I break down crying as I tell her Mattie’s story. It has been a LONG time since I cried about this. But just seeing her and being there brought back some really sad memories and I could not hold it in.

Sadness, Pity, Anger: “Hi, I am still here”

Me: “Yes. Yes you are”

As Dr. R was leaving she gave me a hug. I wish I had given her a Hope for Mattie card to let her know that I am not always a disaster, that I usually have things under control and am very positive about Mattie’s future. I think I am going to mail her one 🙂

I have decided that acceptance doesn’t have to mean that I am okay with the way things are, because I am not really okay. Acceptance means that I can’t change the past and I am learning to live with it.


If you have not already checked out our new Hope for Mattie Necklaces, please do. All the money raised from the sale of her jewelry goes directly towards Mattie’s therapy and medical expenses.


Having a child with PVL is a waiting game we were told. No one knows the effect the cysts in her brain will have on her development, motor skills or cognitive skills. I remember in the beginning charting milestones… or should I say not charting milestones. Milestones were so important to me. I would spend time every week going over what she was doing and what she was not doing, I was driving my self crazy and it really was not helping. Now, a year later, I pretty much stopped charting since there was really not much to mark down. “Pretty much” meaning that I look at it every 3 months 😉 Mattie is at a 6 month old level in most skills except gross motor where she is more like a 4 month old. Since Mattie was born 9 weeks premature, she is still very small for her age. Mattie weighs 16 pounds and just recently made it on the growth chart for weight (7% Woohoo). Even though Mattie was diagnosed with cerebral palsy in December, we are still playing the waiting game. We are not really sure what Mattie’s full potential will be.

Continue reading