REginas day started out little rough... She woke up 6 am. and took her first nap 9 AM. Her eyes are getting tired really fast now. .
Around 10 AM hospice nurse came in and took a look at REgina. Reginas heart sounds fine, lungs sound fine , no fever... ... I also expressed my worries about One moment she is doing great and then suddenly she is down and then good again and then down again... ANd sometimes it feels like omg , maybe it is last nap she takes... Nurse told me that Regina will give us more warning signs . USUALLY kids do, braintumor kids do.... Breathing issues mostly.. and more....
We had few FUN FUN FUN visitors today :) Diane and her cute dog that liked to Lick REGINA AND ME came by around 11 am. Regina enjoyed it :) It was nice to chit chat... Then Risa and her fun suitcase full of clitter and clue showed up.. OH, and Cupcakes.... AND THAT WAS SUPER FUN:) REgina got all glittery :) It was so cute to see her just relaxed, and Risa doing what she is doing best... Entertaining... Seriously, I think this woman has 101 jobs. So talented :)
Then Reginas former classmate and her mom came by to say hi :) They brough some great goodies for me( YES, FOR ME ;) ).
. And something that but really big smile on Reginas face - Webkinz ....
Regina did lot of smiling today :) BUT all this smiling made her really tired and around 4 PM she was upstairs in our bed and pretending to sleep. She finally fell asleep around 7 pm.
I wonder what tomorrow brings ...
Again.. I want to thank you and hug you for all good you have done for us... I do want to send each one of you THANK YOU NOTE, but I have no energy for it. I have not even sent out birthday card to my family in estonia, or taken care of my Goddaughters.. or friends... it is very very hard ot stay sane. It is so much easier to let go and just close myself up and not communicate, but I feel like this is my only way to stay "healhty"... SO thank you for taking my crap, and adding your crap ... Love this crappy world...
7 comments:
You`re AMAZING for hanging in there and being a happy mom in this awful situation, where she needs it the most and it`s the hardest to give it. She is SO lucky to have you, i hope you can keep staying strong and sane!
and Regina... poor baby, i just can`t get my eyes off her and stop this hammering thought:there has to be something, how-how-how....
-and if me, a total stranger, can`t stop that obsessive thought and constant worry...how can you find that strenght? wow. _and yet you deliver- there must be a reward for that somewhere- i guess in her little heart, the peace and happiness you can give her, the little happy moments, the cuddles, the LOVE
all the best to you guys!
if there just were something, just something... :(
What a good Mom you are, doing what you do best, being a good Mom. Spending time with Regina, letting everything else more or less go, because all of that can be taken care of later. You just need to have your time with Regina, Gabriel and Nick right now. Plus all of your kind friends that drop in. I'm sure your family and friends that aren't getting Birthday cards understand this. Hang in there, sending my best to you all.
So happy to hear Regina is having some good times and enjoying each day as best she can. She is so precious and we continue to pray each night for her to have peace.
Diana, don't worry about any bills right now. They will still be there when you are ready to deal with them. That was one blessing about St. Jude. Our insurance covered everything but we never had to make one phone call or heard one thing about insurance. You shouldn't have to deal with that crap at this stage.
Always thinking of you guys-
Colleen & Ellie :)
Happy to see all the pictures of friends coming by to visit. I was so happy to visit with Regina and you last week.
As to sending "thank you's" please do not feel obligated to do that. You have thanked each and every one of us on your blog, as well as in person and that is more than enough. I know I speak for everyone when I say that it is an honor to be part of your journey. Letting us in is more thanks than we want or deserve. You've expressed your thanks, and I respond, "You're welcome," and I mean that in the deepest sense of the phrase.
Much love to you and all your family,
Katrtina
What Katrina said. No one needs a thank you note, we all know that you have bigger things to take your time and brain power right now. Try to take care of yourself too, I worry about you taking it all on yourself and not having the energy to care for and love yourself. It may not be much but please know all around the world we are thinking of your family, and sending grace and love and peace to you all. Love, love, love! Hugs to all!
My heart hurts for you and your family. You and your family are a true inspiration.
XXXXXXX
I just wish taking your crap meant we could truly do something to help Regina. She is such a sweet, beautiful young lady who deserves so much more. Hope that each and every day there can be some beauty for her...be it your hugs and cuddles, visits from the puppies, or Webkinz. YOU ARE an INSPIRATION and I honestly don't know how you are holding anything together, much less sending personal thank yous out to us. What I do want to know is what Regina could/would appreciate from us...I am sure you don't just want random strangers at your door..perhaps a dinner gift card, a favorite Webkinz...what?? Do enjoy the simple things with her...after all, it is all that really matters! Sending hugs your way!
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