On November 14, 2016 Journey Mei had a very complicated open heart surgery, called a Kawashima, at Children's Hospital in Birmingham. It was a surgery that we were thrilled was even being done…because we were told there may not be ANYTHING that could be done for her. I remember sitting in the hospital after her surgery waiting on her to wake up. But I don't remember where I first heard about Make A Wish.
Days in the hospital seem to drag. Journey Mei was a trooper, really she was. But day after day, of the same movies is a bit much for mommy and daddy. I don't remember how I heard about Make A Wish, but I know it was in the hospital. I looked it up online as I was sitting next to Journey Mei recovering from surgery. It is an organization, a nationwide organization, that grants wishes to kids that have a life threatening illness. There is a Make A Wish organization right here in Alabama, come to find out.
We have never known, from the very beginning what to expect with Journeys heart condition. Looking back now, Im amazed at how far she has come. So when I read about what Make A Wish does, I wondered if she would qualify. We knew from the moment we chose to pursue her file for adoption, that her heart condition was complicated, and life threatening…but we always said that we would love her, and share Christ with her, as long as we had her.
So when Journey Mei was approved within just a few weeks by Make A Wish, we were shocked. In fact, we worried. Is there something we don't know? Is the doctor not telling us something. Is she worse off than we thought? I mean we didn't expect to hear back for months! But they called, and said she was approved! Journey Mei was going to get to “make a wish”!
For a just-turned-3 year old, home from China less than a year, figuring out what her “wish” was going to be was a challenge. We talked over and over at home with the other kids. This is Journey’s wish. We don't want to influence her in any way. We had a long way to go in getting the communication across to her as to what was actually going on. After weeks of talking to her and asking her questions and walking her through as best as we can…she said she wanted brownies! LOL True story.
As we began to prepare the other children for what was going on, we took each one of them aside, by themselves and explained to them WHY Journey Mei was getting to “make a wish”. With the older kids, it was so simple. They understood, and were so excited for their sister. With the younger ones, it went better than expected for sure. But when we sat down with Fisher to explain the situation, I must admit, I was in a pickle. I tried several ways to explain to Fisher why Journeys condition was the same, but more severe. And honestly, he understood. I mean, it hadn't been too long since we were in the hospital with her. It was all fresh on our minds. He didn't miss a beat. But I did.
I thought about it over and over. WHY. Why was her condition more severe? Was it? Really? I thought about the reasons a child would be approved for this kind of thing. All the hospitalizations. All the medications. All the limitations. All the things they might not get to experience. All the sacrifices the family of a child with severe special needs must make. All the things the siblings give up. Maybe Fisher deserved a wish too. I couldn't think of a good reason that Journey Mei should get a wish and he shouldn't. So I emailed the coordinator and asked. I told her our situation and asked if it was possible for us to have a “combined” wish. We didn't feel right about asking for two wishes. We didn't want to take advantage of them. I spoke with her about Fisher, and she explained that IF Fisher qualified, he would get his own wish. They didn't “combine” wishes. She explained that this is what “we do”. Each child deserves their “own” wish. And she encouraged us to send in Fishers application.
When it came time for her to meet with the MAW coordinators for Journey Mei's wish, we were so excited! What would she choose? What would she say? How would she act? This girl, Journey Mei, she is a little shy around strangers. Not anything like her brother Fisher who never meets a stranger. She clammed up. Journey Mei would NOT talk to the coordinators AT ALL. She would cling to mommy and totally go silent. Oh me. How is this going to end up? Well luckily, this wasn't their first dog and pony show LOL. After much discussion and research it was decided that a trip to Disney World was the best choice for Journey Mei. There are some restrictions as to what wishes they will grant for a child as young as she is. So based upon that, and her love for anything that Trinity loves, AKA princesses, it seemed like the best choice. And its definitely not something we would be able to do on our own. Yes, we have been to Disney World years ago, right when we brought Fisher home, but now that we have 6 children, it would be almost impossible.
Between you and me, I was having some reservations about all of this wish business. I mean, there are children out there who are seriously ill. They spend so much of their lives in the hospital. They deserve this. Do our children really deserve it? Should we even be doing it? Our kids have heart conditions yeah, but they are doing really well! As soon as these thoughts began to come to my mind, we began having trouble with Fisher’s heart.
Ever since his surgery 3 years ago, he has been a rock star! No trouble. Star patient. But all of a sudden, he started having these things called SVTs. Its where your heart jumps off rhythm. I wrote a long post about it already called “when Journey Mei saved Fishers life”. Over the past 6 weeks we have had 4 visits to the ER with Fisher, 2 new medicines added to his daily regimen, along with side effects ranging from rashes to depression to extreme fatigue to nausea. Its a lot for a 6 year old, not to mention mommy and daddy. But that is part of life, living with a severe heart condition like his and like Journey Mei's. And I needed that reminder to comfort my heart and reassure me that yes, this trip is just what the doctor ordered. And we are so so very thankful.
So in just 12 days we leave (Lord willing) for Orlando! We will be staying at an amazing place called Give Kids the World. It is a dream come true! This place was started by a holocaust survivor who wanted to give children with life threatening illnesses, hope. It looks like candy land! Unbelievable!
Journey Me received her t-shirt and a gift tonight from her wish coordinator as well as all of our travel information. And the best news yet…Fisher has been approved for his very own wish!!!
I wonder what he will wish for?
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