A New Journey
Yesterday marked the one year anniversary of the day we took TJ to the Serenity House in Oskaloosa. I remember that day all too well - it was a Monday. Let me rewind a couple days before that. Friday we had had a special meeting with all those that were helping to care for TJ. We met in this room with doctors, nurses - all those we had begun to love and trust as family. I remember them telling us that they didn't know if there was anything more they could do for our precious son. Tears were shed, hugs were given and genuine love was in that room. Arrangements were being made for us to come "home." The weekend would pass by and Monday was soon upon us.
I was absolutely scared to death to leave that hospital and all the people we had gotten to know, trust and love. How were we ever going to manage each day without them. It felt like the days after TJ was born and we were taking him home for the first time. Except we weren't taking him "home". He would never set foot into our house ever again. He would never lay in his bed or ride his bike or play the computer or sit on his bar stool at the island. This was all so hard for me to grasp that day. We would be taking him to a new place with new people. Would these new people care for him and love him like these wonderful people had. I had NO clue what to expect and it terrified me!
I remember A LOT of people coming and going out of his room. One of the first visitors was from Dr. Buatti (his radiation dr.). He apologized that he couldn't have done more for TJ and in all his years of doing what he does - he hadn't seen anything like what TJ was experiencing. I recall Dr. "Smirnoff" coming in to say good bye. We had developed such a special relationship with this dr. I honestly wanted to bring him with us. Then Dr. O (his chemo dr.) stopped by. She asked us about TJ's bracelets - the one with Romans 8:37. I got out my Bible and shared with her this verse and explained the meaning behind it. I took the bracelet off my wrist and gave it to her to keep - she was absolutely thrilled. This woman had such love and compassion. Then someone from genetics came in to ask questions and take a sample. There was even a lady who came from Make a Wish. I won't go in to great detail - I was just NOT impressed with her. It was one dr. or nurse after another coming in to say their goodbyes. There were MANY tears shed that morning.
Then it was time for us to actually leave. We had a couple of nurses and the head nurse help us out. They gave us a gift and told us to read it later (I think they just didn't want to cry anymore)! We carefully put TJ into the van. One thing I remember which is kind of a side note. TJ had gotten this amazing pillow from physical therapy and I kept telling everyone I was going to steal it. Well when we went to leave they gave it to us too!!! I can't fully explain this pillow, but it would form around whatever you wanted it to. We usually put it under his head and formed it to stabilize his head so it wouldn't roll over to the side all the time. We did use it to help his head in the van. We gave hugs, thank you's, cried and we drove off. We were leaving everything that was familiar to us. Everyone who had helped us so much. What were we going to do without them. Not only that but it was like we were heading down the road of uncharted territory, but the only exception was we knew where the ending destination was going to be and that SCARED US!!!
I called the Serenity House to tell them we were on our way. I was completely drained after that hour and a half drive. We pulled into the garage where we were met by familiar faces. We placed TJ in the wheel chair and headed for the Daisy Room. It was absolutely beautiful yet there was something about it that made me feel uncomfortable. I saw no monitors, nothing that resembled a hospital. How was I going to know when TJ was in trouble? How would we be able to help him? It scared me. I also asked how many nurses do you have to which they answered only one per shift. To which I asked how many patients do you have? I can't remember how many they had at that time, but they told me potentially up to six. This worried me - how was TJ going to get the help he needed when he needed it. We were spoiled in the PICU. However, I had to realized this was not an intensive care unit. Once I changed my thinking I began to calm down a bit. We were all clueless on how long we would actually be there and I think that terrified me as well. I KNEW this was the right place and the right decision for our family. We were all within 15 minutes from each other now. I will have to admit the first couple of days I wanted to go back to Iowa City. However, this place became my home away from home and my family away from my family. I grew to LOVE that place and all the people in it. We have such precious memories of that place and all who work there. Oh the stories I could tell (which maybe I'll do later)! The nurses, aids and volunteers have a special place in my heart - it is almost indescribable. And so began a new journey in our life - one that would change us forever.
I was absolutely scared to death to leave that hospital and all the people we had gotten to know, trust and love. How were we ever going to manage each day without them. It felt like the days after TJ was born and we were taking him home for the first time. Except we weren't taking him "home". He would never set foot into our house ever again. He would never lay in his bed or ride his bike or play the computer or sit on his bar stool at the island. This was all so hard for me to grasp that day. We would be taking him to a new place with new people. Would these new people care for him and love him like these wonderful people had. I had NO clue what to expect and it terrified me!
I remember A LOT of people coming and going out of his room. One of the first visitors was from Dr. Buatti (his radiation dr.). He apologized that he couldn't have done more for TJ and in all his years of doing what he does - he hadn't seen anything like what TJ was experiencing. I recall Dr. "Smirnoff" coming in to say good bye. We had developed such a special relationship with this dr. I honestly wanted to bring him with us. Then Dr. O (his chemo dr.) stopped by. She asked us about TJ's bracelets - the one with Romans 8:37. I got out my Bible and shared with her this verse and explained the meaning behind it. I took the bracelet off my wrist and gave it to her to keep - she was absolutely thrilled. This woman had such love and compassion. Then someone from genetics came in to ask questions and take a sample. There was even a lady who came from Make a Wish. I won't go in to great detail - I was just NOT impressed with her. It was one dr. or nurse after another coming in to say their goodbyes. There were MANY tears shed that morning.
Then it was time for us to actually leave. We had a couple of nurses and the head nurse help us out. They gave us a gift and told us to read it later (I think they just didn't want to cry anymore)! We carefully put TJ into the van. One thing I remember which is kind of a side note. TJ had gotten this amazing pillow from physical therapy and I kept telling everyone I was going to steal it. Well when we went to leave they gave it to us too!!! I can't fully explain this pillow, but it would form around whatever you wanted it to. We usually put it under his head and formed it to stabilize his head so it wouldn't roll over to the side all the time. We did use it to help his head in the van. We gave hugs, thank you's, cried and we drove off. We were leaving everything that was familiar to us. Everyone who had helped us so much. What were we going to do without them. Not only that but it was like we were heading down the road of uncharted territory, but the only exception was we knew where the ending destination was going to be and that SCARED US!!!
I called the Serenity House to tell them we were on our way. I was completely drained after that hour and a half drive. We pulled into the garage where we were met by familiar faces. We placed TJ in the wheel chair and headed for the Daisy Room. It was absolutely beautiful yet there was something about it that made me feel uncomfortable. I saw no monitors, nothing that resembled a hospital. How was I going to know when TJ was in trouble? How would we be able to help him? It scared me. I also asked how many nurses do you have to which they answered only one per shift. To which I asked how many patients do you have? I can't remember how many they had at that time, but they told me potentially up to six. This worried me - how was TJ going to get the help he needed when he needed it. We were spoiled in the PICU. However, I had to realized this was not an intensive care unit. Once I changed my thinking I began to calm down a bit. We were all clueless on how long we would actually be there and I think that terrified me as well. I KNEW this was the right place and the right decision for our family. We were all within 15 minutes from each other now. I will have to admit the first couple of days I wanted to go back to Iowa City. However, this place became my home away from home and my family away from my family. I grew to LOVE that place and all the people in it. We have such precious memories of that place and all who work there. Oh the stories I could tell (which maybe I'll do later)! The nurses, aids and volunteers have a special place in my heart - it is almost indescribable. And so began a new journey in our life - one that would change us forever.
Tammy I must of needed a good cry today because I came to this post and read it ,every word and broke down.What a year it has been for you and the whole family, I will never forget what has happened to your family.And hope at some point life will go on and the 3 boys will fill the part of your heart that has been emptied.
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