The Story

I wanted to write down our journey thus far, because on Wednesday we have our MRI scheduled and then hopefully we get some real concrete answers about how this all happened.

OK so early December there was a toy that was on Sammy's left side he rolled over to reach it with his right hand. Daniel thought this was strange, I wasn't home. Well we watched him for the day and realized that he REALLY favored his right side. I did tons of searches after making a doctors appointment, and was convinced that he had a mild form of cerebral palsy. I called my mom in tears and she said NO he doesn't have cerebral palsy. The night before the doctors appointment I said a prayer that I would have an answer about what was going on with my sweet little boy. Right after I finished the prayer Sammy woke up. Daniel was at school so I brought him downstairs to wait with me. Well an immediate feeling came over me that he did have cerebral palsy. I of course couldn't sleep and I just cried and cried. That next morning could not arrive sooner, and off we went to the doctor. Let me preface this by saying that I am lucky to have a doctor that I really trust. She is one of those doctors that you know is thinking about your best interest. She immediately saw what we had been seeing and but didn't think that we were dealing with a neurological disorder, more of a developemental delay. I felt relieved walking out of the office with a script for PT and OT evals. Though I had read about such mild CP where it only affects one limb and is very mild. I called to make the evaluation appointment and I think Heavenly Father knew that I needed to get in as soon as possible because an appointment that usually takes a month to get came available the next day. So off we went to meet Karen. Karen is a physical therapist and without her I would be a complete mess. She of course is gushing over Sammy and evaluates him for a hour or more, she tells me over and over that she does not diagnois but she does think that he has cerebral palsy. But VERY, VERY, VERY mild she keeps saying over and over. She calls over Stephanie (my other therapist-I joke that they are my therapist too!) and they talk with words that I didn't understand at the time about tone and different things. Both agree that if it is cerebral palsy it is mild and that it probably happened before or during birth. So we just keep with the therapy till we meet with Dr. Klava the therapy doctor. Daniel and I both go to this appointment and after seven minutes he gives us an official diagnosis of cerebral palsy left hemiparesis. We ask him tough questions like "Will he have a limp?" probably to some degree. "Will he be able to type on a computer with two hands?" probably not, fine motor skills will be harder for him. "Is this considered a disabillity?" yes. We as parents never want a label on our kid, and it was tough to read the paperwork that does label your kid. While I named this blog our "hemi" boy it is just not something I am comfortable doing in the real world. Because Sammy is ours, he is our sweet little boy. I feel like we have been robbed of the last three months because I have been on auto pilot, just going through the motions but really somewhere else. It is getting better as time goes on, but I want to remember that Sammy is our kid not the label. And while we do want the best treatment available for him, I struggle with what the label will mean for him in the future. I remember six months ago or maybe more, I saw a dad walking on campus with his two teenage boys. The boys were tall and so handsome and I just stopped and thought "OH I hope one day Daniel will be touring a college campus with our handsome boys!" I just want everything for our kids. I struggled with even starting this blog, because I don't want to favor Sammy over the other kids. But this past week I realized that no matter how hard I try there will always be a soft spot in my heart for Sammy because this world will be a bit tougher for him. Right after this all happened Lillian was crying and whining about something, and it took every ounce of my strength to not hit her because I was thinking YOU HAVE EVERYTHING! You have it so easy and so good. But now I realize that everyone has something they have to work on and we just happen to know what Sammy's trial in this life will be. I also struggle with the guilt of it all too. Was it something that I did, could I of prevented it. As I was driving to church last Sunday and I was listening to a song about a woman that buried her children and her husband, and I just finally had this tearful moment where I just said "ENOUGH! SUZANNE!" You have a great life, Sammy has a great life, just move on. Get over yourself. And really it is get over yourself, because Sammy is the happiest little boy. He doesn't right now know that he is different, he just works hard and plays and laughs. There will be a day I am sure when he will come to us and be down and wonder why him. We will need to be strong for him and tell him that he was given this trial in his life, but that he was also given great strength. If I have learned anything from being a mom of five it is that we are all so different. Amazingly different and we all have our own talents, and I can already see that Sammy is a determined little guy and if anyone can work as hard as he is going to need to work it is him.

I was writing the random thoughts in my head so sorry about that. I just want to write down my feelings and not have to worry so much about editing, so you will have to just try to follow along.