So its been a long while. Happily we can say that Patrick continues to grow and progress. It is an understatement to say that he keeps us busy. I guess in this case you can say no news is good news. I’m going to try to pick up the blogging duties for a bit. We’ll see how that goes. You will soon find out that Emily is the writer in the family.
To understand this post we need to go back a year. A year ago about this time we were in Omaha hoping and praying that the docs there would be able to place a new central line. The docs here did their best but we unable to place a central line that would work for transplant (still love and trust the docs here). Every once in a while we have moments that remind us just how fragile the balance we have found with Patrick is, this was one of those moments. The docs in Omaha were able to place a new line, but were quick to remind us that he is more or less out of central line access, and line placements were only going to be harder.
We decided that it was time to explore Make-A-Wish for Patrick. This is something that we discussed off and on since Patrick was very little. We had decided that he wouldn’t understand how special his wish is and wanted to wait as long as we could. The opposite of that is if something were to happen to Patrick we would regret not giving him the experience. The experience told us that it was time to explore things.
We we got home from Omaha, it was the start of the school year, and there was a lot going on. Emily got in touch with Make-A-Wish early this year. We followed the process, and waited to hear. In early March we were notified that Patrick would be able to make his wish. We were to bring Patrick and a small group to the wishing room to make his wish. Small group was interpreted to grandparents.
We received a key to the wishing room in the mail. Patrick was (and still is) fascinated with keys and cars. We ended up hanging the key on the wall so he knew it was there but could wander around with it (and probably lose it).
Finally the day came. We took the key down from the wall. We met his wish granters for the first time. Wish granters are volunteers whose priority is to make sure that we wisher is completely spoiled. They are also our interface with Make-A-Wish. Our wish granters are Beth and Natasha. Who succeeded in making the day special for Patrick.
We gathered as Make-A-WIsh and got to know our wish granters a little, and then we went on a tour of the building and the grounds. They have gardens that are open to all wish families, kinda as a place to go to remember the memories made (jut the thought of this has my heart heavy). We threw a token into the wishing fountain. At least Patrick did. Emily and I kept our tokens, we’ll go wish when the time is right.
Patrick took the opportunity to run around the gardens, over the bridges, and any where else he could think of to go. I tried to reign him in, as I’m usually the strict one. The wish granters didn’t bat an eye about letting him be out of control for a while.
Our tour took us upstairs. They showed us where the wishing room was, but before that each member of the group was given a little slip of paper. We were asked to write a wish on it for Patrick.
We also got to help Patrick decide what his wish was. We had to push him in a direction, but we were pretty sure that he would love the experience at Give Kids The World (http://www.gktw.org/index.php) and the attractions in Orlando. We have heard magical things from other wish families about GKTW. I must admit that it was hard to not have him know exactly what he wanted, maybe that means we have spoiled him too much.
Finally the time came to go into the wishing room. We got out his key and went to the door. I helped him open it. It opened into a circular room with glass floor. In the middle was a waterfall that went from floor to ceiling. Quite the awe inspiring room.
When we all got into the room we each read our wish for Patrick. What a touching intimate thing. To have his parents and grand parents each share a special wish for him. Tears were shed, but it was a great experience. We have those sheets of paper, they will be memories for a life time.
Finally the time came to make his wish. The room went dark, and spots on the floor lit up to show Patrick the way. I helped him go from colored spot on the floor to colored spot on the floor. We finally made it to the wishing spot. Patrick put his wish in a tube, and then put it in the wishing stand. His wish was made.
Then we went and had doughnuts and cupcakes. Two things Patrick was into at the time. Emily and I got to fill out paperwork. And Patrick had fun with the personal attention he was getting. Because Patrick runs a high risk of dehydration in the summer heat we asked that his trip be scheduled for the fall.
His wish was made, now we just had to wait until it was time to go.