9/24/05

Things are going ok with us at home.
We are both still getting used to having him here and are both dealing with all sorts of emotional ups and downs. It'll be that way for a while I imagine. Today is an ok day--not a good day--but an ok day for me. Theo is about the same all the time, now that we are getting his medications straight. He is on a good dose of morphine so that he is comfortable but not knocked out, we are learning how he is most comfortable, how he likes to be held, positioned, etc. He has times where he seems to feels pain or when he is agitated, for which he gets ativan as he needs it, but we are learning how to best calm him down and help him be soothed. He is mostly peaceful and content. We can tell he knows he is in a safe place, he senses who we are, he responds to our voices and touch, he knows he is loved. He loves to be held and cuddled, he likes to dance to music that he likes (especially Thelonious Monk, Miles Davis, Duke Ellington, a new cd of children's songs given to us by a friend of Jamie's), he responds to our love and care. All of these are good things. Jamie and I are getting used to the new Theo and the whole idea of how things are and how things will be as well as still dealing with the trauma of the last several weeks and the fear of the known and of the unknown. It'll take a while. In dealing with right now though, we luckily have strengths in very complimentary areas. He is better at knowing how to load and run all the pumps and machines, change the medication cassettes for the iv, measure out doses and keep the med schedule straight, note everything down, while all that makes me a little crazy, nervous and frustrated. And I am a little better at being comfortable holding, changing, bathing, comforting our new Theo, being ok while I am with him. Both of us are getting better at everything and are helping and supporting each other where we need help. I am so grateful to have him. He is a wonderful Daddy and my best friend. Most of the time you hear only about me through these posts; my thoughts and feelings. I don't say enough how wonderful Theo's father is. Theo is lucky to have such a loving, strong, reliable, giving, sweet man for his Daddy and so am I.

We are doing ok. I usually feel at a loss for what to tell people when they want to know what we need, because I don't really know what we need. I know a lot of people feel uncomfortable, don't know what to say to us, don't know what to do and want me to tell them what to do or what I need. Sometimes people seem to have problems knowing how to interact with us now. It's hard to find a balance between being empathetic and sympathetic and overbearing or maudlin or maybe it's the other extreme, feeling worried you might seem dismissive or uncaring if you don't talk enough about our plight. It's ok to not know what to say. Just know that we are grateful for all the support we have gotten and continue to get. Don't feel afraid to talk to us about it, but sometimes it's nice to talk about other things. You don't have to always ask how we are, because we don't really know if you really want to know or if the question is only being asked because it's socially appropriate. Ask how Theo is or just let us know you're thinking of us. Don't worry that we don't want to hear about your life or your worries, we do. Everything going on with the people we love is still important to us. Just please know that your love and support mean so much. And we thank you for it. This is a very pervasive thing for us, but the rest of the world doesn't stop because of our pain, even though it sometimes feels that it has. It's strange trying to live day to day and do normal things, have normal converstations. No matter what anyone says or does, or what I'm talking about or doing at any given moment, Theo is in my mind, my heart. My sadness right now pervades all my day to day activities, even when I smile or laugh, sadness is waiting. I know there is nothing that anyone can do to take it away. Sometimes I feel as though I will never be truly happy again. I feel different from everybody else, feel that I am irrevocably changed from who I was just a short time ago. I feel that surely everyone can tell, even the people at the bank or the grocery check out, that something is different about me. That I don't fit in with everyone else suddenly, that I am "other". Like grief and sadness are almost physical things that somehow everyone can see. I don't think that's really true, but it feels that way sometimes.

Jamie has opened the custodial account for Theo at Wachovia. If you want more information about it you can email me. We have had wonderful donations from the people we work with and from family members and friends and all that will go into Theo's account. Anthing sent to us will be put into Theo's account for his expenses and to help cover any expenses we may have if I or Jamie need to take any leave without pay.

We all send our love--
Karla, Jamie and Theo