After we were done playing we grabbed some lunch at the little pizza stand at the museum and Grace's grandma offered to pay for my meal... I did the typical asking twice if she was sure and Grace's mom commented that my best option was to just graciously accept otherwise we would be there all day. So I did.
This reminded me that graciously accepting has been one of the lessons I have been learning a lot lately.
At least in the part of the society that I am in, taking things shows weakness. If you take something offered without trying to turn it down multiple times you are seen as a person who is selfish.
Match that with social justice philanthropy me and you have a mess of me thinking that its bad if I accept help. I am all for helping fund raise for someone else or helping with an event, or speaking for somewhere to raise them money... as long as it helps someone else. It almost took friends of mine setting up the fundraiser for Jilli's chair last year because I was being stubborn.
I struggled with this with Katie Beckett... we were drowning in medical bills before I would accept help. I have struggled with this when people have been kind to us, often thinking that someone else needs the kindness more... that we will pull ourselves up by our bootstraps and figure ourselves out but that maybe someone else is having a harder time and I wouldn't want them to not be helped. As I wrote that sentence that thought came to mind of how little I must think of God if I don't think that he could provide for others and me.... ouch!
When you boil it down its a mix of social pressure (just scroll through Facebook and you can see how often families like mine are called lazy by a political party and you will understand the pressure not to take help from anyone otherwise you are called names) and pride.
And its my choice to decide if I am going to let social messes and pride stand in the way... or if I am going to sit and complain about things while not accepting the gift God is trying to give me in the situation.
The even bigger place I am learning this lesson right now is with a meeting we had last night.
Back in June we had a really long day... Lydia had surgery and Jilli had an ER visit and both kids ended up admitted at the same time. The day was one of our biggest worries before having Lydia... what if we had two kids in the hospital at the same time... how would we handle that?!
While the crazy of all of that was going on our special needs nurse came to talk to me so we could make some logistics plans for how to make the day go as smoothly as possible and at the end of our meeting she asked me if I was finally ready for them to put in the referral for Jillian's Make A Wish.
This is not the first time that someone has talked to us about Make A Wish... but I have turned it down every time before siting that I was sure someone else needed a wish more and to spend the funds on them. I would always say that we would figure out the means of happy experiences for the girls, but to be honest by the help of my parents for our Disney trips.
Well in that OR waiting room I was at one of my most stretched thin times and one of the times I have felt most helpless in life. I needed to wait for Lydia in surgery but there was nothing I could do to help and I couldn't be with Jilli in the ER. So when the nurse asked I didn't have it in me to let my pride or social worries get in the way... I finally said yes to the referral.
We got a call a few weeks ago from Make A Wish (maw) that Jilli qualified and that someone would be coming over for a meeting to talk with us. We talked to Jilli and explained to her what a wish was and started asking her what she might like to do. Jilli has been struggling with decision making so we knew that we needed to give her time to think before the meeting.
When we asked her first if she could do anything in the world what would it be... she said to go to Ronald McDonald House... I told her that we do that often, she gets to think even bigger for her wish. She thought for a while and then said that she wants to swim in the monorail pool at Disneyland at the Disneyland Hotel.
We don't have cable so our main form of entertainment in Youtube and Jilli loves to watch vloggers... One of her favorites, Justin Scarred lives by Disneyland and goes there often and she loves to watch his adventures. We also watch Disunplugged and she loves to watch their overview video about the Disneyland Hotel and she has said for many years that she has wanted to swim in the monorail pool. We are headed to Disney World in December with my parents for Jilli's birthday but none of us have been to Disneyland before.
So last night we had Jilli's maw meeting at our house. They brought her safe balloons and a bag of princess toys. They brought princess cupcakes and I was so proud of how Jilli thanked them for bringing cupcakes but kindly turned down eating them... she didn't make them feel bad for bringing the cupcakes and I was really proud of how she handled the situation.
They talked to Jilli for a while about what she likes and her favorite things... and then they asked Jilli what her wish was and she told them to swim in the monorail pool. We looked at pictures of the monorail pool and they asked her if there was additional things she might like to do while at Disneyland. I think she might love the Cars area since she loves Route 66 so much (that is another love thanks to vlogs). She said she would love a make over. I am hoping that by any chance that one of the vloggers she loves just might happen to be in the parks while we are there, I can only image her face if we ran into one of them.
Jilli had such a big smile on while they were here. We have asked for travel dates after NIH to give Jilli something to look forward to after NIH and all of the tests they will be doing.
The past few weeks I have had to remind myself that its ok to accept this. There is a part of me that still says that other people need wishes more, but then I look at my sweet girl and see how excited she is about this. Its also hard to accept that you qualify for a wish.
We will find out in a month or two if they are able to grant this wish and then the planning starts! I was searching Amazon last night for Disneyland guide books because we haven't been there before and it is different the Disneyworld... and Jillian LOVES guide books and catalogs.
So let the adventure begin!
Last night was also a reminder about why we need to do what we are doing today... Today Jilli is being evaluated again to start speech. As her mom I understand her well and was not seeing the delay however Lydia's speech path came to me a while ago and asked if I was ok with an eval. Jilli was dismissed from OT last week so this is the perfect time to have speech start. Last night they had to ask me a lot what Jilli was saying so I am hopeful speech is able to help her because she has so many great things to say that I want her to be able to effectively communicate.
We are still raising money for the Briggs and Als Run/walk for the Children's Hospital. The last day to sign up to be a part of our team is August 30th!!!! The last day to donate is September 14th. We are still a long ways off from all of our goals CLICK HERE to donate or sign up. You do not need to physically be there for the walk, you can sign up to be a virtual participant
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