She made a wish…all of us together with Disney. It came true. Too much to write about so I will try to share with pictures. I have lots more coming. One of the many, many amazing things Make A Wish/Disney does for families is we get a free photo pass. So all those pros there that take pics…we get a cd of those!! I did a pretty good job of living in the moment…putting the camera down….So many memories. I hope to blog tomorrow about it…just to write and see where it takes me…But here are a few pictures to share our trip.
swallow
Sometimes I find the changes we suddenly face so hard to swallow… Tomorrow we leave for our daughters Make A Wish trip. She loves Disney…so going to Disney World will be amazingly fun for her. But I think thing she is most excited for is being with our whole family together for the vacation. Our kids…they fight…they are after all siblings. But they love each other so much too. Jonathan insists that he be the one to push her in her wheelchair. And Jennifer seems to really like it. Of course I do too! Something got Jonathan sick on Friday night…and Tony a bit sick last night (but he is sure its food). Honestly though we have no way of knowing if the rest of us might get sick on the trip. We are a “rush” trip. Meaning her drs felt that we needed to go January at the latest[…]
I had planned to blog tonight. But one of our boys has a stomach virus. So in the interest of health I am planning on a early bedtime in preparation for the messy battle ahead. Just wanted everyone to know we are well and still hopeful that we will leave for our Make A Wish trip to Disney World bright and early on Monday morning as planned.
sucks
This weekend we had a very special wedding. Our Fairy became a MRS. I will blog about it more when we get some pictures of it all, I cannot wait to share it! But JLK was a flower girl as was Baby Charlotte and our boys ring “bears”. Couldn’t have possibly been a better day! Here is a shot Tony snagged! Today was my first real mom day since all of this started. Getting the 2 bigger kids to their schools and feeding, cleaning, settling disputes all on my own. It went better than I expected! But it was so hard to drop them off. I feel so unsettled being away from them now. I have this overwhelming desire to keep all of my “duckings” close to me. Thankful for good friends who miss gymnastics to let me come over and stay somewhat sane. But[…]
Disneyland
It feels like so long since I have blogged. I uploaded (or down loaded not really sure the difference!) pictures from my camera yesterday. I looked at them today to remind myself what I have been wanting to write. As life happens I think to myself how I want to write it…and explore it. Coming home has been quite the transition though. Not much day to day life more-so wonderful memory making time. It started with Christmas and then what we call Scharrenberg Christmas and then Disneyland…home to New Years Eve and lice!! eek (although not fun…another life experience with my girl in the books) I thought today as she was getting de-liced that one day when the boys are in school and a lice outbreak happens somebody who doesn’t know might say I am lucky I don’t have another daughter since its harder with girls hair…I am already thinking of[…]
Knowledge
This morning I woke up feeling clean. The fears of last night subsided and I feel compelled to write. To say how grateful we are to be waking up with our children. So many parents that lose children don’t get the knowledge we have been gifted. Knowledge that the day she was diagnosed was also likely her last birthday…we did it right. Most likely our last holiday season as our complete family…so we going all in. And having the time to say what we need to say, prepare the best we can and give her as many life experiences as possible. With gratitude in my heart for all of you reading and sharing this experience with us. What I failed to say last night… Merry Christmas and thank you!
Christmas
Christmas… We couldn’t have pulled it off without help from family/friends. Friends who wrapped presents and family who stayed here til 1am Christmas Eve to help assemble and move furniture. We got our new couch…our new snuggle spot…I love it. I am sitting on it right now. Will this be the place she takes her last breathe? Christmas eve was good. Family at my sisters house. They played present passing games and ate a gluten free meal and fed off each others excitement. Our kids had a great time and as is per usual for the Kranz family we were virtually the last to leave. I was happy to stay up past midnight…I didn’t waste a moment of what will likely be her last Christmas Eve sleeping. Tonight will likely be the same. This morning was great….slow and lazy and full of happy smiles. Santa spoiled the kids this[…]
Expectations
Expectations… are a waste of time and always seem to be wrong. Yet I cannot stop myself from having them. i expected the last day of radiation to be a celebration. For me it was anything but. Because now we do nothing…At least during treatment I felt like we were fighting, like we were doing something. Now all we can do is just wait for the tumor to start re-growing. Is it already? We went bowling to celebrate, a gift from her Santa. I thought it would be perfect ending to such a happy day. Instead I looked at her and felt so angry that we have no more to do to help her…nothing more to try to heal her or get that tumor to shrink. It was the ultimate reminder that there is no cure….not a damn thing we can do. But she had a great time…that should be[…]
pillow fight
Tonight is our last night here in our little apartment. Even if radiation doesn’t happen tomorrow we won’t need a overnight here. I am glad that she will be happy to be done. Radiation is hard on a little body. But now I have to share her everyday…and she has to share me. I miss my boys, all 3 of them. I cannot wait to see them every morning and night. But I also have truly enjoyed this time with my daughters. Jennifer and I have gotten so much closer over these 7 weeks. We both have learned so much about each other and I think ourselves over this time. Its actually a little amazing how quickly we have adjusted to this new lifestyle. Our girls…sisters…Baby Charlotte and Baby Jennifer have also grown closer. I feel like this time of pedicures and movies and tea parties and most importantly giggles has[…]
first/last
Firsts and lasts. I feel like thats my everyday. First and lasts. Radiation went amazingly well. Beforehand todays anesthesiologist pulled me out to say it was up to us if we wanted to cancel or not. That the way JLK is when asleep for radiation is the hardest case they have seen. Just her breathing issues that is…. But we went ahead with it since we were there it was worth a shot. And she did well…( I started to type she killed it…so much of the way I talk is changing) We had some quiet time at home and then she wanted to have a tea party. Its one of her favorite past times. Today she wanted to get all dolled up….all of us. So she picked out clothes for the 3 of us. Since I knew she wanted to do a tea party I called a place about[…]