Wednesday, April 1, 2009

Questions...beware of a little complaining

What does a parent do when his/her three year old daughter, who has a rare disease effecting her in ways unknown, cries uncontrollably and inconsolably for several hours straight during the night? What does he/she do when he/she has a newborn who has her days and nights confused and wants to wake every hour to eat at the same time her three year old sister is crying uncontrollably and inconsolably? What does that same parent do when her husband has to go back to work and has to get sleep during the night so he can function at work?

I'm feeling a little bit anxious right now. The previous questions sum up our night last night. My head hurts from lack of sleep, and I am hoping and praying we can figure our something so that Emma will be more comfortable or whatever it is she needs so she'll sleep through the night. I'm also hoping and praying Cora begins to get her days and nights turned around so she doesn't have the need to nurse hourly at night. A little more like every two or three hours would be great! Thank goodness Kelvin is off for a while longer.

It's just so frustrating not knowing what Emma needs to comfort her. I don't know why she is crying. I don't know how to make it stop, and very little seems to make her happy anymore. I wish there was a parent handbook with the ins and outs of dealing with a child with Batten Disease. My friend Jenni and I are just wishing most of all we could take our girls shopping for the enzyme they so desperately need. Wouldn't that be nice?

Something neat...the night before last Emma was laughing in her sleep. I miss hearing that.


  1. Im so sorry, since Alex doesnt communicate with me I struggle to know what he needs as well, so I sort of understand, barely. I wish so much for things to be easier for you.
    I can at least say the newborn night and day confusions wont last but a few months tops!

  2. I'm so sorry that you are struggling so right now! I have always had a difficult time doing night duty with our newborns and I have no idea how you are doing this with another little one needing your attention! I wish that I could offer advice, but know that I will be praying!

    Does Emma settle down when she is held or rocked? If so, have you tried some type of swinging system with her? I know that they make bigger swings for children with special needs. Just thinking...I'm so sorry that I can't be of more help! Hang in there, as if you have a choice, right?! PRAYING!!!

  3. I so wish you could take her shopping for that enzyme she needs too!!! I am going to continue to pray that Cora gets her feeding and sleeping right so you guys can take care of Emma and get some rest.
    Always praying for Miss Emma too!!!
    I am glad you got to hear her laugh though....even if it was in here sleep!!

  4. I'm sorry you are struggling right now. I know it must be heartbreaking to watch Emma so upset. You are an amazing woman. I'm praying for your beautiful family.

  5. I wish I knew what to say but I don't. All I can offer is my prayers. And a big hug next time I see you :-)

  6. Have you tried Melatonin? (I'm not sure I spelled it right) they recommend it for autistic kids that have sleeping issues. I know several people that have used it with success with their kids. Is their a support group for parents of kids with the same disorder? Sometimes the parents have more practical ideas than the doctors. I wish I could be of more help. I'll be praying for you and your family and of course Emma - she's such a cutie.


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