“There you are!”……which coming from Peter more often sounds like “Tha ya-arrrrr” or “Thar you is” and is heard often around our house as he goes off in search of the next person to sit with, play with, snuggle with, or just give a hug followed by a kiss and a pat of the back. Then the pitter patter of his footsteps as he heads off to find the next target of his attention. Hey! Here we are!! All 8 of us Krause bears are here riding the roller coaster of life. This week alone can be measured in numbers. Twelve inches of hair, two sick adults, four golf practices, three sick kids, two wrestling practices, one pack meeting, two wrestling tournaments, one ER visit and a surgery. Aside from our normal school, work, therapy and doctor appointments, this week was a little extra chaotic.
I feel neglectful not even posting on FaceBook for World Down Syndrome Day on March 21st – a day which around the world celebration, recognition and awareness is brought to Down syndrome. Why 3/21? Because individuals with Down syndrome have 3 of the 21st chromosome. On one hand I think we celebrate, recognize and bring awareness every day – every where that Peter goes is an opportunity to do each. We often find ourselves discussing Down syndrome even when Peter is not around. So in some ways it is 3/21 every day. But on the other hand, because we celebrate all of our children every day (and that can be hard some times!), our minds are often on the challenges of life. I can guarantee that I have spent a heck of a lot more time thinking about cancer and other medical challenges, than I have about Down syndrome. When I see Peter …..I see Peter. And ultimately that is what we dream of for him. To be celebrated and recognized for the individual that he is every day. Just last week I was at Peter’s school for a musical performance. Which in Kindergarten was 3 songs, performed in under 15 minutes, with very loud music and lyrics on a tape player. The kids moved around and danced, some knew the words, and many more adults with big smiles taking picture, after picture, after picture. On that day Peter was so happy I had come to school. As he marched down the hall from his class to the music room, a pretty girl with dark hair was escorting him. He excitedly waved and called out my name. In the music room the girl stood behind him. Giving him a little direction, she spent a lot more time asking to hug him or asking him for a hug. All of which Peter did with a big smile. After the show, the kids marched back down to class. I waited in the hall to take Peter home. A lady working for the school district stopped on her way out to ask me if I was Peter’s mom. She went on to tell me about how she had asked the tall, pretty girl with dark hair to “give Peter some space” after observing her directing Peter around the class. The girl insisted she needed not to stop, and after a short discussion declared that she need not stop directing Peter because “when I grow up, I am going to marry Peter!” The lady smiled at she told me this, and we commented on training their future husbands at a young age. After she walked away I sat in the quiet of the hall and was filled with gratitude. This young girl made my dreams come true! Why? Because as a 6 year old she celebrates and recognizes Peter for Peter. She doesn’t see a classmate with disabilities that she needs to push around. She sees a handsome young boy with a big smile who will so willingly hug her and hold her hand when she needs it. She feels recognized and celebrated, and in that does the same for Peter. That is what I hope for every day for all individuals regardless of ability!
Peter has taken off since stopping chemo! He is not yet sleeping consistently but there has been some improvement. More recently he seems to be enjoying food again – maybe he no longer has the bad flavor in his mouth. He is vocalizing a lot more – which we hope will lead to some strides in his communication. His energy level is through the roof. And amazingly he is doing things like bending both knees when reaching down to pick something up – finally! He is willing to walk up and down the stairs as opposed to crawling up and down. It is exciting to think of where we go from here! We have had one hospitalization and one ER visit since he stopped – the ER visit was this last week because he was throwing up something awful. He is on the mend now. He had an oncology appointment this week and they let us know that within the next two to three weeks they would like to remove the port. Wow! We are really there!!
In the spirit of reaching the light at the end of the tunnel with Peter’s treatment – to honor his battle won, and the cancer battle my mother lost – today I chopped off twelve inches of hair which I will be donating to have made into wigs for children who have lost their hair due to cancer or other serious medical challenges. In some ways it seems so minor. While Peter never cared that he had no hair, I know for some children that is so isolating. My mother never got far enough in her battle against the lung cancer to lose her hair, but we know she thought about it. As we went through her closets at home, we found a small plastic bag that contained some hair she had cut and put aside. She wanted my father to use that to order her a wig that matched her hair color. It is hard supporting a family member or friend through cancer – there is often so little we can do – but I hope that a wig can lift some spirits to whomever receives it. Twelve more inches and another donation!
I get many messages asking me how Michael is doing – and I am happy to report he is doing amazingly well! The surgery was a success – with two large pieces of bone reattached to the bottom of his femur. The days following the surgery were painful for Michael, and heart breaking for those of us who could not take the pain away. At a week he was cleared to go back to school, and was thrilled to do so. I thought my nerves were shot going through this, but I was wrong. How do I know that? My whole body tenses up when I see Michael whipping around the corner on his crutches, and racing down the straight stretch in long fast strides that go from zero to sixty in about 2.8 seconds! And when that is not enough, he will put the crutches aside and get around with a combination of twisting on his good leg and hopping on it. He is not allowed to put any weight on the injured leg and I consider it nothing short of miraculous that he has not fallen down. Even his physical therapist was scared watching Michael on the move! PT has been going well – and Michael proudly wears the badge of honor of being the only teenage boy client of this therapist who did not cry his way through the first several sessions of therapy. He white knuckled it, but grinned through it. He is looking forward to April 10th when he should be able to put 25% weight on it. Honestly not sure what that does for him – but heck, he is excited so I am excited!
So just to round up this update with all our other weekly metrics – John and I got a mild version of what Peter had but it was rough. Alexandra, Michael and Gretchen were also sick – G is suffering with allergies now too. As only three year olds can do, we have a vocabulary full of Gretchen-isms which include “My nose! My nose!! My nose is racing again!!”……see, her nose doesn’t run, it races! And when her nose is stuffy she doesn’t like the poo-taste on her poo-brush. Try to keep a straight face every morning and night when she says poo-taste instead of toothpaste! John and Alexandra have golf practice four times a week leading into the upcoming tournaments through the spring. Jack’s wrestling season has started – two practices and two matches a week. Tommy excitedly had a cub scout pack meeting this week where he received rank. He also proudly carried the flag. His goal is to become Eagle Scout one day – so glad he found something that is all him! John did have surgery earlier this week. It was for an injury he had seen last year, but very recently had become extremely painful. The surgery was outpatient, and he is on the mend too.
We have had our ups and downs – but wrapping up a calmer weekend. I am headed to California in the morning – weather willing – and looking forward to Easter with the family next weekend. We have much to be thankful for!!
Wishing you and yours good health, and a happy Easter season!