If you have not read this book, you need to get online, or go to your nearest bookstore and buy it. It is simply incredible.
Jennifer has held a dear place in my heart over the last year and a half since I "met" her through her blog Pinwheels. I went to our local library about two weeks ago and requested this book, I figured since we didn't have the money to purchase it, and I knew it would be a great tool for the library to have, it was a win win situation.
When they called me on Friday night and told me the book was in, I was jumping up and down for joy. They had already closed for the night, so I was there first thing Saturday morning to pick up the book.
As I started reading it, the memories came flooding back. Rhett being born early, the NICU, and the diagnosis. As I was reading it I smelled the smells again of the NICU, and heard the sounds. It took me back to the painful day of leaving the hospital without Rhett.
I remember sitting in my room with an empty car seat, looking at it and seeing all of the other moms going home with their car seats full with their new little ones wrapped in blankets of pink and blue.
It also made me realize another thing. These rooms were filled with celebration. There were balloons, and gifts, flowers for the mother's. My room was empty. There were no gifts, there were no cards, or balloons, or flowers. Nobody had come to celebrate our precious new baby. They didn't know what to say. He wasn't in the room for them to come see, he was lying in a warmer a floor above. A whole new world for us and our families and friends, and then there was the suspected diagnosis.
Andy's way of dealing with it was letting everyone know that it was suspected that Rhett had Down syndrome. I think he thought in the back of his mind that he would be able to tell everyone in a big celebration that the test had come back negative, and that we had a perfectly fine baby, who was just small and needed to grow.
I don't think I ever really had the chance to grieve. I was too worried about Andy, and how he was dealing with it. I had to take the diagnosis, and be the optimist. I learned a whole day before Andy did that Rhett did indeed have Down Syndrome. But I couldn't tell him. He didn't want the results to come from me. He wanted to hear it from the Doctors, so if he were to get angry and upset it wouldn't be at me.
So when he came in that night after work, I left to pump. He held Rhett in his arms with the Boppy pillow supporting them and read him his Dr. Seuss book for the night. I told the nurses at the nurses station that he was in there, and they paged the doctor.
As Jennifer describes in the book, when you are pumping you are supposed to be relaxed, and thinking happy thoughts. Needless to say, that time I didn't get much milk, just two ounces, one ounce from each side. I refused to let myself feel anything. I couldn't have any emotions, not at that moment.
I went back, and Andy was holding Rhett, as tightly as he could, considering all of the wires and the fact that he was only a mere 4 lbs. He had tears streaming down his face, but somehow I knew it would be alright.
I remember that I kept asking, "You still love him though, right?"
"Yes, I love him now more than ever" was his response.
Of course my peace didn't last more than two hours, because then the cardiologist came in and told us that Rhett had a heart defect that would require open heart surgery. That was when I lost it. After all, how much can one's life completely change in less than 15 hours without having some type of a breakdown?
After the diagnosis of the heart defect, we didn't think much about the Down syndrome. I was given a blanket and an outdated book, as if that were to somehow help. I read the first 10 pages, then threw it in the trash as I walked out for the night.
MY child was not going to be limited in any of his abilities, and I was simply not going to listen to all of the bad things that could happen, or would happen. All I wanted to hear was that he was going to be okay, and that he had a chance to be the very best that he could be.
That was it, we left the hospital two days later, I called Early Intervention and told them I wanted someone to come to our house as soon as possible. We have never looked back.
Some days, I get knocked down, when I get that look from a stranger. That look of pity as they see me hauling his oxygen and him in his stroller to the Dr.'s office. I want to tell them not to pity us, for I wouldn't have our lives any other way, but I just smile warmly and nod my head.
Then there are the people who refuse to acknowledge that Rhett even exists. For some reason when you add a feeding tube, and oxygen to a kid, it's as if he has sprouted two heads and three rows of eyes.
But for the most part, people are warmed by Rhett's soul. When he says "Hi" to them as he passes, they reach out to him, and tell us how lucky we are to have such a beautiful little boy. Most people simply cannot resist his huge smile, that lights up his whole face and makes his eyes sparkle. I find that old men are the most captivated with him. I don't know what it, is but they go out of their way to say hello to him.
I know that we are truly blessed to have this little boy in our lives. He has touched so many, and there is a reason he is here. He has a mission on this earth, and it's a big one. I just know it.
Road Map to Holland made me think of the emotions that I had pushed deep down inside. The ones that I wouldn't allow myself to feel, or think. It brought them to the surface, and in a way, Jennifer's words, and her experiences healed me, they healed me when I didn't even think I needed to be healed.
