Monday, January 21, 2013

Hope Kids and more happy things!

I have been wanting to do a post about all of the Fun Lily has been having outside of the HOSPITAL!!
Lily was accepted in to HopeKids this past summer.
Hopekids is a non-profit organization for families of children with life threatening illnesses.
Hopekids provides weekly activities to give affected families something to look forward to.
A little bit of Hope can go a long way, 
especially when it seems like every day is just filled with medical stuff.
The first event Lily was able to go to was
Clifford Live!
She LOVED it.
next, Lily was in the hospital and they came to visit her!!!
They brought along a wife of a coyotes player and they gave Lily a goodie bag!
Then Shaun and I got to have a date night with other Mito hopekids families and
we saw The Trans-Siberian Orchestra.
 Next was the Hopekids Christmas Party!
This was AMAZING!!!
Lily got to ride a pony, there was a petting zoo,
She met Elmo for the First time
(this is the same Elmo that came to her party)
She got her face painted, got to meet Santa
 (who she didn't want anything to do with)
 and came home with LOTS of toys and prizes 
Plus there was an AWESOME picture booth there...
I told her to make a silly face and this is the face she made...
guess her parents ARE pretty embarrassing...
 We also got to go to
Moscow ballet presents The Great Russian Nutcracker
Lily was amazed by the dancers and tried to copy everything they did.
This is when her obsession with ballet began.
She has literally talked of ballet DAILY ever since!

This WASN'T a hopekids event but Lily was so excited about it it deserves mentioning
At IVIG they had free horse drawn carriage rides
This awesome man comes every week to PCH for the patients and gives them free rides!

This also WASN'T a hope kids event but it was AWESOME!
One of our nurses told us about 
"Sensitive Santa"
Its for kids with Autism or sensory sensitivities
(like Lily's Sensory Processing Disorder)
They have the kids wait in a quiet room with darkened lights and 
lots of crafts and coloring pages,
they had Christmas movies playing as well
and they had LOTS of Gluten free treats
(Gluten free diets are very common with sensory kids, 
and if Lily ate she would probably be gluten free)
They then took the kids out to Santa ONE AT A TIME
and let Lily have as long as she needed to get comfortable enough to sit by Santa for a picture.
It took her  about ten minutes but she sat by him and as you can see,
she smiled!
I wouldn't have been able to get her withing 5 feet of Santa at the mall!

 Lily also has developed a LOVE for "Tangled"
She has decided she is Rapunzel AND that Rapunzel is a ballet dancer
 Our sweet friend Patti had this hat made for her and SHE LOVES IT!
But since she has decided that she is a ballet dancer I cant get her to hold still for pictures!!

 HopeKids must have seen how much she Loved Rapunzel
because they called us with tickets to go see
Diseny Princesses on ICE!
 She was so excited when Rapunzel came out!
 At the end ALL the Disney Princesses and their Princes came out 
She was very excited!!
She watched the majority of the last half like this...

I have to say
(and I am a bit embarrassed to admit it)
I had tears flowing through the majority of these events.
HopeKids has given us something to look forward to besides just Drs appointments, and
hospital stays.
HopeKids has let Lily have days filled with all the wonder and awe that childhood should be filled with.
I am so so grateful to Hopekids for this!
The days that we get to go to things like this makes it feel like we are "catching up"
on all the childhood that she is missing out on because of her medical conditions.
Now, I am not saying Childhood Should be filled with expensive events and shows to make it worthwhile.
Mine certainly wasn't and I had a splendid happy childhood.
But Lily doesn't get to have carefree days.
She doesn't have a single day go by without medical interventions, from needle sticks, to
dressing changes, to meds, to machines, etc.
Her life is filled with pain and hurt and fear, 
and although we do our best to ease her pain and fear and we love her fiercely 
sometimes a show or a children's event is exactly what she needs to take all of our minds off of things
and just enjoy.
Thank You HOPEKIDS!!!

1 comment:

  1. That's so amazing! Having activities like that for her to be excited about make such a huge difference I'm sure. I couldn't imagine going through each day with as many medical interventions as she does, but I know if I get excited looking at the pictures of these events then she must be thrilled.