Tuesday, April 12, 2011

She is sunshine in my soul

Over the last 6 months, as Maaike has been home bound, my husband Sid and I have traded off Sundays for church.  Its not ideal, but it has its perks too.  The unwritten rule has become that whom ever is staying home with Maaike that week is in charge of making dinner.  Before this ritual began Sid had three dinners in his repertoire:  fried rice, tri-tip steaks, and grilled chicken, each dish being seasoned to perfection.  But it is now not uncommon to find Sid on a Sunday morning perusing the internet for his next master recipe.  But this last Sunday that was not the case.

Sid's oldest sister is an ER nurse and last weekend she and her family moved into a house about 5 minutes away.  She so kindly offered to watch Maaike for us so that we could go to church together.  It was such a special treat.  We got several stares from those who know we can't attend together and I'm sure they were wondering where Miss Miaake was.  We used to sit on either end of the pew so as to corral the kids, but this time the kids were pushed to the side so that we could sit together.  It was sweet...but still a little bitter...we were still not complete.

The service was nice, but the tears came during the closing hymn.  When Sid saw what the selection was he nudged me and whispered, "Of course, it had to be this song."  I had no idea what he was talking about.  He then pointed to the lines of the second verse, "And Jesus listening can hear the songs I cannot sing."  (LDS Hymn 227).  Then the tears began to freely flow.

I didn't know that Maaike would lose her voice with the trach.  Tracheostomies are placed in the trachea below the voice box preventing airflow to cross over the vocal cords.  Another trach mom had clued me into this before Maaike's tracheotomy and so I asked our ENT about it.  He assured me that Maaike would have a one way valve that would all her to vocalize on the exhale, like Christopher Reeves.  Having never been through this before I assumed that it was a different kind of trach and Maaike would therefore keep her voice.  I wont get into it now, but I was wrong to assume.  When I first saw Maaike post surgery and she was back arched screaming without any sound coming out I became frantic that either something went wrong in the surgery or they placed the wrong kind of trach.  The fact is that the one way valve that allows vocalization is on a small "button" (called a Passy-Muir valve) that is place on the end of the trach and we wouldn't even see one for many months and are still only able to use it for minutes of the day.

Life with a speech-less child equals constant watching.  I watch her on a video monitor as she sleeps because I can't hear her cry when she wakes up.  She is never left alone because if I can't see her face I don't know what is going on.  There have been times when she was crying in my arms, but until I looked down at her I had no idea.  As time has gone on I have gotten better at noticing the changing sounds of her breathing.  She sleeps at the foot of my bed and before she is even fully awake I'm up because the pace of her breathing wakes me up.  I still can't tell the difference between crying and laughing without looking at her, they make the same static shushing sound, but as she has gotten stronger she has been able to force air past her trach and make little squeaks.  We have started signing with her and plan to give her language and communication in what ever way we can.

But regardless of notes sung for ears that can hear, I am thankful today to believe in a God who listens with His love to the sweet songs of a very little girl who audibly cannot sing.


  1. I have been reading Presser foot and I saw your post about this new blog.
    That is sad to hear about your baby's voice. I am a sign language/Deaf Studies minor and am so happy to hear you are pursuing sign. I'm sure she'll benefit from it as you become more fluent! Way to be open to that mode of language --it is wonderful.

    I don't know if you're in Utah or not, but I would get in contact with Will Garrow or Flavia Fleischer at Utah Valley University. They are both linguists, and are wonderful people to work with. They could help you get the resources you need to learn ASL fluently, wherever you are.

    Best of luck.


  2. Rian, this is a beautiful post and touched me deeply. Still thinking of you often, and we'll be back in the states in June. Love you lots!

  3. Beautiful. I'm so happy you emailed me, hope to meet you this weekend and so thrilled to be following your blog now - what a delightful writer you are with some pretty great subjects to write about :)

    Tara (kidz/Tulip festival!)

  4. I remember that feeling as well.. not being able to hear your child laugh or cry, to not feel your child's breath as you bend down to kiss their sweet lips. I hear you sweet lady I hear you..


    1. Thanks so much for your comment. I've been reading post after post on your blog now. It is amazing that the diagnosis and treatment can be so different, but the life with a special needs child brings out so much that is in common. I look forward to our acquaintance.