I sat down today and  read all my blog  entries from start to finish. It’s been quite the journey!

I sat and read and I cried and smiled and laughed.  I can’t believe it’s been over three years since I started those entries and I can’t believe how many people still read them!

I still remember so many of those days so vividly but there are other days that I had forgotten and it was a great little reminder of them.

One of my most vivid memories is of the day we brought Ali home from the hospital. We’d done some training to put her nasogastric tube in and we left praying that she wouldn’t pull it out! About half way back to Edson she pulled it out! I was screaming in the backseat to pull over and Jason was panicking trying to find a place to stop. Eventually we realized that the inevitable was happening and we would have to reinsert that tube! We got home and set up our kitchen island like it was an operating room. We laid out all the equipment and pretty much tied poor Ali down. We hovered around her like a couple of crazy people and eventually after lots of prep work we reinserted her tube. Although it was great to get it done, we soon realized that we had turned a 3o second procedure into a huge production.

The clearest day for me is still the day that we went to Genetics for the first time. I know from reading my blog that it was February 18, 2010, three years ago today. That’s not why I sat down to read my entries but I do think about that day every year. That was honestly the worst day of my life, no one deserves to be blindsided the way Jason and I were that day. There are no words to describe what it’s like to find out that your child has a life threatening syndrome and that they are going to be so different from other children. The realization that you will probably out live your baby sucks. I wouldn’t wish that on anyone. We were caught totally off guard and were totally unprepared for what we were told about Ali. The next day we went to Ali’s pediatrician. We hoped that he would disagree with the Geneticist but he was even more convinced that Ali had Costello Syndrome then she was. That pediatrician crushed us that day but three years down the road, I have an amazing amount of respect for that doctor and I believe that he is one of our biggest assets when it comes to Ali’s medical care. After our appointments we took Ali home and I will never forget how I felt. I didn’t know that it was possible to feel such grief until that day. I’m not even sure I’ve ever said it on here. I felt like someone stole my beautiful baby and gave me a different one. I couldn’t even look at her. It hurt that much. My parents were here and they cared for Ali that night, in the morning we woke up to our new reality and began to learn to accept it.

Now let’s stop thinking about those darker days, some of them were pretty horrible for me. I’ve often thought that I wished someone could have told me how incredible it would be to be Ali’s mom. I wish that I’d known that night how amazing she was, how determined she’d be and how much she’d change me. No, it’s not all sunshine and puppy dogs, it’s darn hard and honestly sometimes I wonder how we’re going to do it. Many, many people have told me that special children go to special parents and that you’re never given any more than you can handle. I’m not sure that I believe that. What I do believe that is children go to the RIGHT parents, you learn to do what they need you to do whether you can handle it or not. It’s easy because they belong with you and you love them more than anything. Ali was given to the right parents because she was given to us and I wouldn’t trade her for anything. She makes it all worth it.