6 weeks

It’s been 6 weeks since Rosie received her new lungs. That makes 7 weeks that we have been in St Louis. This is the longest we have been away from home – the time before that was earlier this year in February when we were in New Mexico for 40 days. I wouldn’t mind having the New Mexico weather in St Louis right now! It’s been so hot and humid. It’s been a challenge to find things to do that are indoors while trying not to be in places with large crowds that could put Rosie at risk of picking up bacteria or a virus.

Rosie is feeling so much better. It’s amazing to see her do simple tasks. She has so much energy now. She’s always telling me she is bored! I ask her what she wants to do and she says “I don’t know. Something”. Yesterday she took all the dinner dishes out of the dishwasher and washed them by hand. Then she picked up the living room and dining room and swept the floors. I was already in bed but I could hear her doing something. She wouldn’t tell me what she was doing until it was done so I stayed in the bedroom until she came to get me. I love that she has energy to do those things now. She is really focused on getting caught up with her school work. She is doing great and asking the doctors when she can be released for full activity. She can pretty much do anything she wants to right now but we do have to be aware that her chest is still healing on the inside and her immune system is very suppressed. She found out there is a Six Flags in St Louis and wants to go. The doctors agree with me that it might be better to wait until next summer when her immune system is a little stronger before we do anything like that! They also agreed that she should wait another month or so before she does the circus trapeze school outside of Union Station. I think someone is making up for lost time.

She talks about her donor and hopes that the family will want to meet her. I can’t imagine the connection she feels to her donor and family. A part of her donor is living in her and two people have become one. She has been asked to speak via video for COTA this month and in October she will take part in a candle light ceremony to honor organ donors and their families. Her biggest news is that she was cast as Goldilocks in an upcoming production of Shrek at our theater at home. The performance is the end of November and she will be home mid October. She is over the moon happy to have gotten the role. She told me she can’t stop smiling. She found out Sunday night and was still smiling Monday! It bring tears to my eyes just thinking about how happy she is. It makes it all worth it. This is what organ donation is about. This is why we did all this. So she can really live. Last night she wanted to help make dinner. We were listening to the Thoroughly Modern Mille soundtrack while cooking. Yes we are those people. We listen to musicals pretty much all the time. Rosie was in a production of Mille a little over a year ago and was doing the choreography in the kitchen while cooking. What a difference from 3 months ago when she had to pick and choose which parts of the show she could do because she couldn’t breathe. It’s just an amazing miracle. I am so thankful that God gave her this chance and for her donor and family who made the choice of organ donation.

It seems like time is going by so quickly here. On one hand it seems like we just got here and on the other I can’t believe we are at the halfway point of our time living in St Louis. The Ronald McDonald House apartment has been such a blessing and really has become a home away from home. We have connected with a few of our neighbors who are all double lung transplant recipients. Our neighbor across the hall, Lee Ann received her 3rd double lung transplant just yesterday. She and Rosie and Alec, who lives in the building next door, have been a good support system for each other. They have to be careful around each other and wear masks and only hang out in common areas (outside or in a common room at the house) but it has been good for all of them. Alec received her transplant about 3 weeks before Rosie did. She is a year older then Rosie and Lee Ann is 5 years older than Rosie. Lee Ann waited 10 months and Alec waited 9 months for their transplants. So while I’m sure they are all anxious to get back home they are thankful to have each other right now.

We are so thankful for so many things and are thankful for all the prayers for our family and our donor family. Without them who knows what life would look like for us. But for now life looks pretty darn good. Since I have confessed to our love for musicals I think it appropriate to leave with this quote from Gypsy. I think it describes Rosie well. “Starting now it’s gonna be my turn. Gangway, world, get off of my runway!”
— Gypsy

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