Working On A Mystery

I bet that you thought – because of the title – that this was going to be some sort of deep thought posting. Nah, I’ll save those for the one-word or punctuation titles…but I liked the title and needed to use it before I forgot it.

These last two days have been filled with all sorts of meetings and phone conversations, and not much change with Liam. His status is similar to how it was during the last medical update, so there isn’t really much to report there.

We went home last night and spent a few hours with Ezra, and for the first time we are starting to see some reactions to us being gone for as long as we have. It’s as simple has he just really wants to be able to spend time with us, so when it came to bedtime he wasn’t too happy about going to bed. One of the most difficult parts of all of this has been attempting to maintain some sort of parental structure and presence with both Ezra and Liam at the same time. While Ezra has been amazing and has enjoyed spending time with the Grandparents, there is no doubt that he is wanting the same thing that we want – to be together at home. We are wearing ourselves out trying to do all of the things that we need to be doing, but there really isn’t any choice. Being us isn’t something that we can ask other people to do.

Insert smooth transition sentence here. This afternoon Liam, Ahna and I had the pleasure of being serenaded by a harpist here in his room. Yea, a harpist (don’t worry, she carries a mini-harp that I think has an official name, but mini-harp sounds better). It’s only somewhat surprising that I enjoyed it as much as I did, but it really had a great soothing effect and felt really good to hear some live music. There is a woman that volunteers her time and talent to go around the NICU (and other parts of the hospital?) and play for people for 10-15 minutes at a time. She is really a good musician and it really felt nice to have the gentleness in the room. Music therapy this week has ranged from The White Stripes to harp tunes….but music is music as long as it isn’t country (sorry Chief G.).

Comments

  1. Con Rettmer says:

    In looking at all the pictures of Liam it’s hard to believe that someone so sweet and inasent has so many medical problems.You all remain in our prayers.Con@Sandi

  2. A harpist came to the PICU once too – it was so great! Still, music is one of the things Cici really loves – for some reason, she likes opera type music. Must be the vocals! He’s SO cute, by the way – loved the photo post. And I do understand having one (or two, in my case) small children at home while you are in the hospital. It’s hard. Really hard. We kept things as normal as possible for them, even if that meant we didn’t see them as much. Do what works!

  3. zukowskico says:

    Liam is a beautiful boy! What a wonderful blessing to have a harpist play for you and Liam! I firmly believe God gave us music, that we might pray without words! Many blessings.

  4. Christi J says:

    Ahna and Oren, The love you two share will carry itself to Ezra – even when he seems to be very unhappy. I understand that it may hurt in ways that cause deep pain. Hold tight to the knowledge that you are fantastic parents and that will be what is needed when it is needed. Hugs and lots of doors sending prayers.

  5. Ohhhh I have soooo much work to do with you four!!! And quite possibly the Grandparents as well 🙂
    Seriously, how cool that she does what she does….music is so vital…
    Our prayers and thoughts of you guys continue daily.
    xoxo Billy G & Family

  6. Nancy Weaver says:

    Oren and Ahna,
    Your family has been in my thoughts and prayers continually since I heard about Liam’s birth. Liam is a beautiful baby, and it is truly heartbreaking to think about his condition. I applaud you both for your strength and endurance through this difficult time. Your love for him and each other will get you through. The pictures of Liam are great, and I know you are treasuring every moment with him. Many people are praying for Liam and your family. Stay strong. Nancy

  7. Bertram's says:

    Your family continues to be in our thoughts and prayer’s. Traci and I talk everyday about your guys and continue to give each other updates as our day goes by. Liam is in our hearts and minds everyday. Stay strong friend!

    Bertram’s

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