The time has come for Harlie's Make-A-Wish trip. Well, the planning part anyway.
I really put off this whole MAW thing for years (obviously). Her social worker at CNMC had mentioned that she was going to put a referral in for Harlie many years ago (right after Harlie's near death experience in March of 2018). I didn't really want to think about it back then, so I never followed up. It also took Harlie about a year to fully recover from that hospitalization, so I couldn't think about MAW at that time.
Anyway, it was the summer before she turned 17 that I saw a commercial that said that it is only for kids under 18. Realizing that she was going to lose her chance, I knew I couldn't put it off any longer. Just a few days after she turned 17 (in 2023), I wrote to one of her cardiologists about it. The approval came THAT AFTERNOON! Isn't that crazy?
Then we had to do a zoom meeting with a MAW volunteer and let Harlie meet her and answer some questions. We had to figure out what Harlie's wish would be. So, we asked her, "Harlie, if you could have anything you wanted, what would it be?" She replied, "I'd like to make bracelets." Um, no. Think bigger. "I'd like to see Wild Kratts Live." Bigger! (We took her to see Wild Kratts Live in May 2024. The tickets were a Christmas present that year.)
So, we asked her if she could go anywhere, where would she like to go? She said "Japan!" Too big. Haha! She says she likes the architecture and flowers/trees in Japan - and the ninjas. Haha! Then she said, "I'd like to go on a safari, like you did." Yes, when I worked at Operation Smile many moons ago, I went to Kenya on a work trip and then went on some safaris with some work friends. That was such an amazing experience and man, do I wish we could give that to Harlie. But, still, too big. MAW doesn't do international trips anymore. So, after some thinking and researching, she decided she would like to go to Hawaii.
There's been quite a few hoops to jump through. They had a hard time with us not wanting to take a nurse with us. We just aren't there anymore with nursing. We would have to start all over with a nursing agency and we don't have any interest in that. So, that took some effort. They eventually said we don't have to take one. Murphy is over 18, so that took some effort, too. Regardless, all was approved.
They sent us a worksheet to help us figure out which island we wanted to go to and what we wanted to do while there. Based on what she wanted to see and do, we selected O'ahu (also it is the island with the hospital, haha). Then they gave us a window of travel and we had to pick good/bad times to travel. I selected Murphy's spring break first, since I knew it would be hard/detrimental for him to miss a whole week of his college courses. Then we just had to wait for our time to come.
Now, it is almost Christmas 2024 and we just got our dates for travel - March 8-15th, Murphy's spring break. We got our first choice!
I'm already stressing about it. I know that this is what they do, and they will do an amazing job. But, at the end of the day, we have to travel, and traveling is not easy for me. There will be packing and medical stuff, oxygen and her chair and long flights. What if she gets sick right before? Or while we are there?! We are going to have to ship some of her medical stuff, and we are going to have to rent some stuff while there. We can't take her power chair on flights, so we'll have to rent a chair for her there.
Also, I know MAW is an amazing organization and I am grateful that it exists. However, no one wants to qualify. Well, I guess I can't speak for other parents. So, we didn't want to qualify. There's a whole emotional thing that goes with the reality that your child is getting a wish granted. I would give anything for her to be a healthy 18 year old who is off to college or work or wherever she would have wanted to go. I'm guessing she would've wanted to go off to college because she loves learning and she loves her independence. And the girl has goals - a doctor for babies and a veterinarian! Man, I can't let myself think like that... Instead we are working on a legal guardianship for her and a MAW trip.
So, this isn't going to be easy for me. Just thinking about it brings me to tears. There are just so many feelings. Sometimes there's a fight, or a tug of war, rather, between the grief in me and the gratitude. Either way I come out crying. Unfortunately, in life, the good doesn't cancel out the bad. All the MAW trips in the world wouldn't change what is difficult or impossible to manage. And they wouldn't give us back what we've lost. I do try so hard to be grateful - but I'm learning that gratitude isn't the Tylenol for grief. I'm going to feel sad about what we've lost no matter what.
But, at the end of the day, I want Harlie to see things and experience things and this is something we could NEVER give her on our own. I also want us, and her brothers to have as many great memories with her as possible. So, I'm really hoping this all comes together so those things can happen.
Since I haven't posted pictures in a while, here are some photos our dear friend Paige took back in November. Paige has been photographing my family since our engagement photos in 2002.
Well, that's it for this post. Hopefully, I'll have time soon to write more. You know I have lots to say, haha! Thank you for reading!
