As is obviously, the moment I got the camera out, Quinn freaked out! She did not want her picture taken, let alone with the painting she created, as she kept pushing it out of her lap.
Finally we had to settle on her not smiling, but not crying, we are learning to compromise already! Oh Boy!
It’s been a busy week. We got out of the hospital on Tuesday; Quinn is now on breathing treatments, which are working great! She also has a few more days of antibiotics. Chrissy took her in to the doctor for a check-up, and he was not ready to sign off for her to go back to school, so we are going back Sunday to hopefully get the OK. We are also missing out on the heart walk this Saturday, luckily John is going to walk for us, with Alexis’s group. Thanks Daddy, for walking for all of the folks with Heart Issues. The other thing we are missing this year is the Lincoln Marathon, at our old house we could go out into our front yard and watch it, but not anymore. I’m going to have to start volunteering to help with it, as the main gal that runs it, teaches at my school.
Well, back to Quinn, she is improving, and doing well enough to go to therapy, for an hour. She did a great job pushing a ball about, and making some choices. Diane asked if she wanted to play with some colorful bug, Quinn replied NO, Diane asked if Quinn wanted to read a book, Quinn replied NO, Diane asked if she wanted to paint, and Quinn replied YES! She still is not doing much talking lately, but when she wants to, she can get her point across! In fact, she has been using that voice to get loud! We have had to ask her to use her indoor voice several times lately, as she is feeling good enough to want to sing at the top of her lungs! Not real words, but a happy loud singsong loud that is music to my ears! Well, good until you are sitting with her at the doctor’s office, then not so much, as Chrissy learned.
We had another meeting for Quinn’s house. So many of the ideas I had in my head have concrete solutions, and a few things I was not thinking about came out at the meeting too. The newest member of our team is BevVan Phillips, and she works as an accessibility designer with Home Access Solutions. We talked about special tables for Quinn, tracks with motors to help move her from one thing to another thing. such as her bed to her chair, or her chair to her shower/potty chair. We also talked about Quinn’s sink, which can move up and down, as Quinn grows and gets different chairs. We talked about faucets, about water levels, about shower heads and hand wands. We talked about door openings, and lifts, even a possible elevator. The two-hour meeting was wonderful, I was so thankful and excited throughout the meeting, and once again after the meeting, I felt nauseous and ill. There is so much involved in a house for Quinn, and there are so many people involved in this. At times I think, if we were simply wealthy, we could just buy something and be done, that could be so easy. Sometime easy is so nice! Instead we are going to touch lives, and be inspired by the people around us. Instead we are going to see a community of people giving of themselves to a 4 year old, who might not totally understand the magnitude of this experience. Instead we are going to make lifetime friends! Delrae and Greg are such wonderful people, we are lucky to have them in our lives. As I meet others who have also said they want in on our adventure, it has been wonderful to see them so excited to meet Quinn and give of themselves in such wonderful ways. So if I put aside my pride, (which I try to do all the time) and open my heart, and share my most amazing daughter (which is also hard at times) with our small part of the world, we will see so much more then a house being built, we get to see the love through the nails, wood, and glass. I think I will learn more about myself through this experience as well as loosing a few pounds, through this process, as my stomach turns into a ball of nerves after meetings are finished, and I think of how much trust and power I leave in the hands of others. I am a very loud self-proclaimed controlling person, meaning that I simply want to be in control. I knew I could never be a substitute teacher, I need my own room, to set my expectations and boundaries for my students, I need to be in charge of Quinn’s meds to make sure they are done correctly, besides nurses, and my mom, with me checking with her, as I was ill, I have always done them. John is the first to say, I want to be in charge of about everything, because that is the kind of person I am. My mom said she wanted to raise an independent girl, and that is true, possibly bordering on excessive, but that is who I am, and knowing that I am not in control of this house is putting me out of my comfort zone. The only blessing is that I can tell the people in charge are very loving, professional, good communicators, and they love Quinn. I can’t beat that, and in fact this might be good for me to learn that I don’t always have to be in control!
As for this weekend, Quinn and I are laying low, trying to get over our colds and relaxing, while John is walking his tail off for the heart walk and the march of dimes both. So we will be at both extremes.
Blessings,
Susan
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