Text to Mr. Sparkly Eyes tonight: “I don’t know much about life; although I pretend like I do. I know almost nothing about death…. but I am about to learn about it in a very hard way. I don’t think R is going to be around much longer.” I often find myself thinking my truest thoughts and sharing them with him. Those were my thoughts tonight. I don’t like my thoughts, but they cannot be ignored. I wish I could tell you all that Ronan had the best day ever. But that would be a lie. I wish I could tell you I didn’t have to hold my husband as we cried about our son together. But that would be a lie too. I wish I didn’t have to tell you a lot of things about today. But I’m going to anyway.
Auntie Karen picked us up for the clinic at PCH. I saw Dr. Adams as soon as we walked through the doors and gave her a quick hug and kiss on the cheek. The look in that woman’s eyes say so much. She knows it all, and I can read her without her having to say a word. I didn’t like what I saw today; but her eyes cannot lie and I could tell she knows what is about to come.
At the clinic, Ronan’s labs were drawn and we were waited on hand and foot by our sweet nurse, Patty the entire day. I did end up sneaking out for about an hour to go to my twins’ Mother’s Day Tea. Bethany met me a the clinic to sit with me and ended up driving me to the boys’ school as there is no way I am capable of driving these days due to my lack of concentration. I cannot tell you how hard it was for me to be there today as all I could focus on was the thought of being away from Ronan and the reality that I had to go back to. My twins were so happy to have me there so it made it all worth it. I would walk through fire for them. I left there with my nerves shot but my dear friend, Melissa, said I put on a great show. She drove me back to PCH as soon as I walked in and saw the look on Woody’s face, I knew something was wrong.
All of Ronan’s levels were out of whack and his platelets and blood were low as well. He was transfused, and Dr. Eshun came in to tell us that Ronan’s liver enzymes were also high, which could mean that his liver is failing. If this is the case, Ronan will not be eligible for the trial over in San Diego. As of now, we cannot do anything except sit and wait to have his labs redrawn on Monday, to see if maybe it was a fluke and his liver was just off due to Ronan being dehydrated and pumped full of nothing but medicine. I am trying my best to get him to drink for me and we pumped him full of fluids today.
After Woody and I found out that Ronan may not be eligible for the trial anymore we went into one of the rooms in the clinic and both sat and just stared at each other. I remember blurting out things like, “How could his happen to him, to us, what did we do wrong, he is so perfect…. why him???” I remember Woody saying something crazy like he should not have been a lawyer, he should have been a doctor so he could fix Ronan. We cried and tried to put together another “plan.” I feel like Woody is almost more knowledgable than most doctors about this disease. He emailed Dr. Eshun about some phase 1 study that he had heard about and asked if he would do it at PCH for us if San Diego falls through. Woody left shortly after he sent the email and I went back into the room where Auntie Karen was waiting to sit with Ronan. I sat on the floor and rubbed his little legs and cried. I emailed Dr. Eshun and begged him to please help us as he has no idea how much we love our little boy and we cannot lose him. He came to see me shortly after and said of course he would help us if he could. He will do the study that Woody recommended if that is what we wish. We are desperate at this point.
We had a long day at the clinic and I vaguely remember Marisa and Danielle coming by. They sat in the waiting area most of the time due to Ronan kicking them out of the room we were in. It was comforting to me to just have them there to give me a hug. Best girls ever. We then returned to The Ryan House. Ronan was pretty tired from his long day out, as was I.
~ It’s now morning. Didn’t get to finish this last night due to being so tired and just wanting to hold Ronan. It’s early, and he just woke up and asked me for some milk. His wish is my command. Little bug.
Last night, after our long day, I was feeling in desperate need to talk to my therapist. I knew I couldn’t leave Ronan and make the drive out to her office though as it’s in North Scottsdale and I just didn’t feel comfortable with being so far away from Ronan. I asked if she could come her and see me. Without any hesitation, she said she would come after her last appointment. I could not have been more thankful. We sat at The Ryan House for almost 2 hours for my “session,” which just felt more like talking to a really insightful friend. I cried a little bit, but told her how numb and in shock I am…. how I don’t really feel anything yet. She said as of now, I couldn’t be any other way. I’m in survival mode, full force. I told her my fears about how alone I’m going to feel without Ronan. How I had always felt a little lost my entire life until he came along. He tied our family together so perfectly. I told her how I don’t know what I’m going to do without him if he does have to leave. I am going to feel so lost without him to look after. That child is my whole world. And I am so, so, scared to be without him as he is my other half. Sarah talked a lot about something surrounding me….. she called it peace at first but we then decided that wasn’t the right word. I’m still not sure what it is, but I feel it too. It helped talking to her last night and she gave me the best advice as far as what the fuck I am supposed to do next. We decided I can only take things hour by hour now. And if I don’t know what else to do, don’t do anything. That’s the best I’m going to do at this point.
After she left, I went into full on panic mode. Ronan does not look well. Woody and I have some hard decisions to make as far as where we want Ronan to be. I have said it before, but all I want is Ronan home where he wants to be. This baby has lived the last 8 months inside hospitals. All he wants is to be home and it is making me sick to my stomach that I cannot give him at least that. As beautiful as this place is here, he thinks it is a hospital and it is breaking my heart. He deserves to be home and if we can make it happen, we are going to. Woody said he felt silly for asking me this last night, but he wanted to know what I wanted for Mother’s Day. I told him nothing, but actually I know what I want more than anything. I just want to take Ronan home. If we don’t get to have him much longer, all I want is for him to be at the place he loves more than anywhere else in the world. If only it were that simple.
Gotta go loves. Ro is up. Have a good day.