Stronger and stronger…

Ethan continues to grow stronger and stronger every day. As we spend our time outdoors on this beautiful autumn weekend, we realize how lucky we are to be home, as a family, and Ethan with us. We are so thankful to have these days…these are the days.

Instead of getting frustrated with Ethan as he sped off on his John Deer tractor to avoid taking his medicine, I decided to have fun with it and chase after him on the ride-on lawn mower…it was quite the sight, but rather hilarious, and Ethan got a great laugh out of it. The kids and Yancy enjoyed a long bike ride, as Yancy pulled all three of them behind his bike (approx. 120 pounds of kids). There was a baby seat that Eliot sat in, and a two-kid trailer hitched to the back of Yancy’s bike. Good workout, huh?

We’ve been home for a month now…4 weeks…Transplant Day was 2 months ago…Grandma Mary left 3 weeks ago…we’re managing…we’re doing it…we’re actually establishing what might resemble a loose routine…maybe…

We only had to go into the Jimmy Fund Clinic once last week. And this week we will go in once on Wednesday. Our other days are spent at home. Ethan’s increase in energy, stamina and focus are changing the days. We are decreasing television, as he no longer needs to rest on the couch for long periods of time. He’s enjoying books much more, they are no longer a chore to listen to, as he has more energy to focus and concentrate. We’re doing experiments inside and outside, baking up a storm, and playing lots of board games, card games, etc.

Good news! Ethan’s doctor has approved a “tutor” to come into our home to help with Ethan’s schooling! And his former teacher/therapist, Jane, has agreed to come in once or twice a week, for an hour or so, to work with Ethan. We are so excited…and Ethan too is excited. I feel that Ethan needs another person to effectively fulfill the “teacher” role, and to call his “Teacher”. I will be there to support Jane’s instructions and lessons for the rest of the week, and to work on Ethan’s Kindergarten work sent home from school. Knowing the work came from school makes him feel connected-he knows he is doing the work his friends are doing in Kindergarten. Jane will be able to work on not only Kindergarten skills Ethan should have/be acquiring, but help rehabilitate his “new ear” (second cochlear implant). This is the solution…it couldn’t be more perfect for Ethan. Thank you Jane…

Grandma Mary was supposed to return this weekend to visit for a weeks or so, but Nana (Johanna’s grandma) was unexpectedly hospitalized. Once again Grandma Mary is there to stand by the person that needs it the most. And our prayers are with Nana, and she is strong. But Grandma Mary, how much can she take? Why from one hospital with her grandson, to another with her mother, in only a matter of months? Tests are being run for Nana…she is comfortable…and we await the results. What could it be? We hope and pray…and hopefully they will be as strong and effective as the prayers Nana has said for Ethan.

Nana and Ethan, December 2002

I continue to pray for the Doktor family. They are in my every thought throughout the day. I look up at the full rainbow late Saturday afternoon, knowing that Jessie is sending her family a sign that she is okay, and she’s right there with them, over them. She’s comfortable now. She’s there to watch over them, guide them through this difficult time, and watch over the other kids that need her. She has a mission, a new mission. An excerpt from their most recent blog entry reads, “We want anyone who can participate…who chooses to be present…to celebrate her life with us. We chose the location of her wake, because the Morris family are our neighbors, and Jessie rode her bike in the parking lot there, and said to daddy (playfully), “When I die, I want to have my funeral here. ”” And I cry at these words, because Ethan too has said such similar things. A few days ago, he said, “I love this toy so much that I am going to take it to heaven with me!”. These words come so casually out of children’s mouths, and they should, it’s innocence. It’s actually a beautiful thing…they don’t have fear of dying. But to me as a parent, it’s terrifying, because I know what reality is.

And we try to keep focusing on our mission, having HOPE, FAITH, BELIEF…to love our children, take care of them, make them feel safe, keep them sheltered from the harsh reality of life.

Emma has been busy with Girl Scouts, birthday parties, soccer, play dates. Mommy and Emma got to go out together with her Brownie troop to see what life was like in a Colonial household. At the Wenham Museum, we experienced how they lived in their homes, what there lives were like, and what they did for fun. Emma got to make marbles and candles. It was a wonderful morning that we both enjoyed.

And Eliot loves having Ethan home to play with…we take comfort in the fact that the teasing and fighting still exists in their relationship. Eliot still weighs more than Ethan, yet is Mommy’s best cuddler. Thanks to Grandma Mary, Eliot is now sleeping in his own bed, in his own bedroom…a first in 3 years. It’s one way to make your queen size bed feel like a king size bed. We’re enjoying the extra room…and Eliot makes sure to come in and make morning visits.

Thank you for your continued support, love, thoughts and prayers. While we can’t see many of you often, we think of how lucky we are to have you in our lives. Your kind actions and thoughtful words and gifts make these days easier…to know we have such great friends, and live in a wonderful community. Thank you…

Gail Doktor: “And if you would…please fold some paper cranes. As many as you can. We will post how and where to deliver them…and we’re not yet sure how we’ll use them…but we would like to have at least 1000 paper cranes in Jessie’s honor.”

Our agenda tomorrow, paper cranes.