Fall 2013

Fall 2013

Thursday, May 24, 2012

People ask

It's so frustrating to me. Medical personnel come in frequently and ask "How close is this to Maia's baseline?" or "What is her functional status normally like? Is this really that different?" REALLY??? It makes me want to scream.

For those of you who may not "know" or have met our sweet girl... Maia is a happy child! She wakes up cheerful, much to the dismay of her brother. She has a smile that will light up the room, an infectious giggle that can brighten the darkest day. Maia does not meet a stranger. She gives wonderful hugs. She may not be able to run as fast as Matthew, but she sure tries! She loves the trampoline, "cooking," school (especially Mrs. Sue), riding the bus, and her family.

I understand that these people have nothing to compare to, no perspective of the situation. So I usually ask if they have a moment and pull out my phone to show them the video of Maia riding her trike just a week before this happened. So that they can understand that this is not my sweet girl.



  1. I understand your frustration and sadness right now. You want and need all those treating Maia to recognize that the child they are treating is so much more than the sick child they are seeing. Advocate, advocate, advocate! I have been able to advocate for our daughter when she was in a coma. Later she was able to tell us complete conversations held in her room when the medical personnel said she was unaware. Maia may be unable to communicate with you now, but she can hear you. Keep talking to her, reassure her, and try to discourage any medical personnel from any negative talk around her. She hears. (I don't mind if you don't want to post this message. It is really just for you anyway!)

  2. Maia is such a sweet sweet girl and I have never seen her unhappy. She loves when Andrew (Peyton's little brother) comes to visit at school and loves to play with him. I hope that sweet sweet Maia can come emerge soon. Tons of thoughts and prayers to all of you.

  3. I am so glad you have that video to show those who don't know Maia very well. It's clear from these beautiful pictures just what a lively, happy little girl she is, and the video will make that even clearer.

    Sending wishes and prayers for a good night, and a much better tomorrow...

    Susan from the RR forum

  4. Beautiful girl!!

  5. Such precious pictures. Praying that our Great Physician will do what He does best. May His nail pierced hands touch and heal her in areas human hands can never reach. And may He hold and comfort you, Mark and Matthew as only He can. Hang in there Melanie and Mark. Your faith shines through so brightly IN SPITE OF all you're going thru.


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