Today's daily photo is brought to you by the Leishman family (Ariauna's Aunt, Uncle and cousins). Such a cute picture and a great idea. Love you all and miss you!
Today is 109 days away from home and it is starting to kill me. Okay, it has killed me all along, but it is really getting harder and harder. The holidays are drawing near and a lot of our RMH family are leaving and we are being left in the dust. I know only a few more weeks and it will be our turn to go (knock on wood). We started our day by getting kids off to school. I had to do some serious bribing to get Austin out the door. The RMH has dance every Friday and the school teacher pretty much makes them all go and participate. Austin said he was either staying home from school today or I was checking him out early. It was kind of funny but at the same time, I understand. They want them to actually put tap shoes on and dance. I know there are boys that dance, and that is fine. But Austin is not that kind of a kid! Now if they wanted him to go swim, or play polo he would hop right on it. So I had to promise him I would come get him before dance and I had to hope the teacher did not get mad at me. Today we got the day off at clinic! Yay! We were so excited! I got Jaxon and Ariauna ready for the day and then I worked on getting myself ready. Jaxon spent most of the morning playing in the hall with his little buddy Peyton. The sad news is they are going home today. Yay for them, very, very sad for us. Here the two of them are watching the iPad in the hall while her family was packing and cleaning their room out.
We tried to stay out of their way so they could be ready to go on time. I was seriously having anxiety about them leaving. Every time I would think about it, I would start to cry. They were one of the first families we met when we came in July and we have grown to love them just like family. Their family was lucky enough that both parents were able to come along with their nanny Rachel. Peyton is the big sister to Coleson who was diagnosed with Hurlers and underwent a BMT about a month ahead of us. I helped Ariauna get her homework finished up and they we went downstairs for a bit. We got some lunch and then it was not long and Ariauna had to go up to the room to meet her tutor for school. Jaxon and I stayed downstairs and played with Peyton a little bit more. Then it was time for the toddler dance class. I missed getting a picture of Jaxon in his tap shoes (they measured him last week and they are actually donated from a group called Brianna's Gift). I will try to get pictures of that next week, but it was fun to watch Jaxon and he absolutely
loves it. Here is a short video of him and a picture or two.
While Jaxon was at dance, the time came to say our goodbyes to Paul, Cara, Rachel, Peyton and Coleson. I was crying before I even tried to say goodbye. I am truly going to miss them and the other families we have met here. Ariauna and I said our goodbyes and got one last picture with them and then we pretty much watched them drive away with tears running down our cheeks. (In case you are wondering, that is the house dog Jerry's head in the picture.)
After they left, I went to rescue Austin so he did not have to do dance. I left Ariauna with her dance shoes and with the older kids that come to dance from the school class room (including Sadie). Austin and I took Jaxon up for the Art class that is all part of Brianna's gift. They do it for the school kids and start with the younger kids first if they want to do the activity. Today they were making shrinky dinks. Jaxon thought it was great fun! Jaxon made a picture of daddy and you can see in the picture daddy was big, then they put him in the oven and then he shrunk.
Ariauna and Sadie enjoyed dance too. Here is also a short video of them and a couple of pictures.
Right after dance and art I took Jaxon up and him and Ariauna laid down for a late nap. I let them sleep for about an hour and then I had to wake them up to go down for dinner. Right after dinner we all headed to the RMH movie theater to see a movie. Can you guess what the movie was?
Yep the movie was Brave! The last picture was of Ariauna and our friend Molly, and Ari snuggled right into Molly like that for the whole movie. She just loves Molly to pieces! The kids had already warned me we were having a late night by the fire, so after the movie we went and parked it right in front of the fireplace. Got out the puzzle we had been working on and we all just hung out. The kids played and we did the puzzle, and I tried to blog a little bit in between helping with the puzzle. The kids also got out the RMH wheelchairs, it is one of their favorite things to do at night. They take turns using them and go up and down the halls having a blast! It is so great to hear them all laughing and having a good time together again and to see the joy in Ariauna's eyes with her siblings around to make her laugh. I missed the sound of laughter from all the kids playing together and am so grateful to have them all together again.
As you can see we finally finished that 500 piece puzzle so next time we will have to start another one. We didn't go upstairs until about midnight. It definitely made for a late night, but it was fun. The only thing that could have made it better was having our friends that have already left to go home still down there hanging out with us.
Today I am thankful for the adult friends I have made at the RMH. I am so grateful to each of them. There were numerous times when I needed someone to talk to that one of them would just be there to listen to me or to give me a hug. I will never forget the day I found out the donor had backed out and was not going to be able to donate and how heart broken I was. I went and knocked on Rachel's door and she just gave me a huge hug. Rachel was like the sister and friends I didn't have here with me. She was the one that helped me through a lot of my really hard days. She was the nanny for one of the families staying at the RMH and I was lucky enough to get to hang out with her. Before transplant Ariauna and Peyton played all the time and after transplant Jaxon and Peyton became little friends. So we got to spend a lot of time with Rachel. I was heart broken today when they left and seriously wondered how I will make it through the next few weeks without her. Leaving my home, my family and my friends in Utah was so hard on me. Coming to a state where I did not know anyone at all was a huge challenge. I am so grateful for all the loving people here at the RMH. And I can honestly say I am really going to be heart broken when it is time to leave. Yes, I am so excited to get home to my family and closest friends but I truly have grown to love the people and the families here and there is just a different feeling at the RMH that I am truly going to miss. It is a great comfort to be surrounded by other people who are going through the same things you are, and it is a great comfort to know you are not alone. It was great to have other Fanconi Anemia families and patients around us, because the chances of ever having that in Utah is so slim. I will forever be grateful for the friendships we have built at the RMH and I love each and every one of the families we have met.
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