To sleep or not to sleep – again!


I’m sitting here beside Bernadette’s bed as she finally sleeps.  She’s been awake since 7:00pm last night and just fell asleep a few minutes ago.  How does she manage to stay awake for so long at a time is beyond me.  esh.   Last night when I went to bed at midnight she asked me to wake her up when I got up in the morning if she was asleep.   She said she’d rather be up in the day and sleep through the night so I can be there with her the whole time she was awake.  Naturally I told her I would never wake her up if she was sleeping as she needs her sleep.  Can’t help but wonder how much of her staying awake today is part of her determination to be awake when I am.   Breaks my heart to see her struggle so much with such little things like sleeping, eating, and rolling over.

This morning we had another attack of the itch monster.  She was relatively fine since Saturday night until this morning when it was suddenly too much for her to handle again.  I urged her that sleep might be the real issue but we tried a dressing change anyway.  It did NOT go well.  We did a couple applications of Calamine Lotion and were ready to put a new dressing on when she started crying and asked for it to be washed off.  So we washed it off and put on a .5 percent hydrocortisone cream given to us by Marie and Joe.  They were so gracious to bring it by this morning.  That seemed to do the trick for a few minutes.  Emphasis on ‘a few minutes’.  Then the problem became that I have no more dressings to put on except the Tegaderm nightmare ones.  So she had to resign herself to scratching.  Her only real relief right now is sleep.  Her relief and mine!

Bernadette has also been blessed with a Meme (grandma) who can sew.  Poor girl, she is terribly skinny everywhere except her tummy which doesn’t appear to be growing larger – this week that is.   Marc and I scoured Walmart for maternity clothes to fit a six-year-old.  Imagine our surprise when we couldn’t find any!   Regardless, we turned to Meme’s magic finger and she was able to take Bernadette’s favorite Hello Kitty shirt and add a panel of cloth on each side so it fits over her tummy.  At first she was excited to have a shirt on again (she’s been wearing nothing the last couple of days as everything is so baggy or too tight) but within 20 seconds she was crying again because the one inch sleeves were bothering her.  So I cut them off.  At first she was happy with that.  Emphasis on ‘at first’.  Again she spent the night with nothing on.  She doesn’t mind it except when company comes over.  So we at least have some shirts for when company comes over.  Hopefully Meme can continue to work her magic and we can get the shirts she’s altering to actually fit over her shoulders too.  At this point after the freedom of no clothing I suspect everything we try will feel uncomfortable.

The other night I said to her, “Oh dear, you’re just so miserable aren’t you?”.  Her reply, “I don’t know what that means, miserable.”  I tried to explain it to her and she said, “I’m fine.”  No darling, you’re anything but ‘fine’, but if you think you’re doing ‘fine’ that is good enough for me right now.  I just hope and pray your impression of ‘fine’ improves drastically some day.

Oh, I have a riddle for you.  What do you get when a six-year-old takes over the family room with the only TV?   A family that rediscovers all their old board games!!!!!!


By Teri and Nick Schroeder

Hi Patti, all the crew and Bernadette, I found this lovely site. We WILL deal with this itch monster. darn I tried for a riddle and cant think of one. lots of love.

By Patricia Kwitkoski
Patty, I want to thank you so much especially for your beautiful sharing from the journal prior to this most resent one. I feel truly blessed to be a friend of your families. The trials that you are experiencing now are ones that I am learning from so deeply. Learning what is truly important in life, selflessness, caring, being there for one another. Learning that “fine” means so many different things. Bernadette, such a brave, sweet little angel you are.
I pray that this whole “itching busyness” will stop VERY soon. Here is a joke for you.
Mother: How did you do on your first day of school Tommy?
Tommy: Not so well, I guess. I have to go back tomorrow. 🙂

By Bernie
My heart goes out to you!
Praying for a peaceful nights sleep, for all of you. Sending hugs.

By rosalie verkin
*Oh sleep it is a blessed thing beloved from pole to pole. To Mary queen the praise be given, She sent the gentle sleep from heaven that slid into my soul” (from the Rhyme of the Ancient Mariner)
Hello Patti, Marc, Bernadette and family. I will specifically pray to our gracious mother for beautiful peaceful sleep for Bernadette so that she can awake refreshed. Of course itching can be one of the more painful things to endure. I pray that this clears up quickly for her. My thoughts and prayers are with you daily.

By Susan D.
You are doing so much to bring her comfort! You all have so much stamina. We can just watch from the outside and pray….take care!

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