Has it really been only three months since this photo was taken? Josie’s already so much a part of the fabric of our family that those long weeks of waiting for her to come home seem like a distant memory!
After the family photo shoot…four days after coming home~
Josie had been home with us for about a month when a snowstorm hit.
That vehicle is Josie’s wheelchair minivan. This was some serious snow!
She threw herself into the whole experience and didn’t want to come back into the house for hours! It wasn’t the best snow for sledding, but the kids gave it a try anyway; she also got to make snow angels, sit on a snow throne, help build snow characters, and bury a little brother like a mummy.
The kids didn’t get photos of all this fun before the camera was accidentally dropped into a snowdrift. It was found weeks later, no worse for its adventure!
Making a snowball~
The snow was almost up to the level of the swing seat.
When we look back at these photos, we can hardly believe she had only been with us for a month; she had already made such great progress toward becoming integrated into our family. She just fits here! She enjoys the same things we do, not only tolerates but thrives on the constantly moving kaleidoscope of life in our family, and travels at the same speed we do. We know how to fast-forward when we need to, but we don’t live that way all the time, nor do we have any desire to.
I know I dropped it right around here…
For those of you who missed seeing this photo the first time I posted it, here is my all-time favorite shot of Josie and Nathaniel. She likes to call him, “Handsome.”
Here she is waiting for her birthday cake.
Or then again, she might be imploring God to save her from her wild monkey brothers.
It was the birthday cake, haha!
Josie says, “I like my wild brothers! I like being wild, too!”
Peter and Josie are buddies. He wrapped up his favorite crayons for her, because he thought she might need back-up ones soon. “Thank you, Peter!”
Before December 23rd, we had a feeling Josie was going to start seeing herself as older and grow up quickly after she came home, with Laura and Jane here as her peers. Now we see that happening more and more in many subtle ways.
Here Laura is holding up the birthday gift she made for Josie. You’ll see Josie modeling it right near the end of this post.
When she came to visit with us last spring for weekend sleepovers, she was mostly one of the middle kids, but sometimes she liked hanging out with the older kids. After coming home and living here for a while, she realized that there was one area she was being like one of the little kids (it had to do with being scared of something that our five and under crowd would be scared of). She decided to overcome her fears and amazingly, she did. We’re really proud of her!
Her gift from Joseph and Lindsay~
A new sleeping bag with one of her favorite superheroes. She got to use it for a few weeks while camping out in the living room before moving into her new bedroom. Now it’s waiting in the attic until the weather is right for camping up in the woods, one of her fondest memories of her visits with us last spring.
The only gift she asked for ahead of time was her own Bible like all our other kids have. She’s very near-sighted even with her glasses on, so we bought her a large print Bible and page magnifier sheets that she uses when reading any books. We also gave her a pretty Bible cover with purse handles so she can carry and open her Bible independently.
One evening shortly after her birthday, she attended an after school party, then came home to change clothes quickly and leave again right away for professional birthday photos.
All her photos were wonderful; here’s the one she chose to hang on our wall with our other kids’ and family photos.
Wheelchair skating! Courtesy of our friends who regularly win free nights of rollerskating at a local rink!
Only the six older kids went that night. Joseph and Lindsay were there, too.
Our belief is that the world won’t come to an end if Josie occasionally stays up late on school nights, trading in a little more sleep for some fun family memories.
She went with most of the family to the employee preview of the “Samson” show on a recent Thursday evening at Sight and Sound, then the very next night she went with the four boys and some friends of ours to a high school performance of “The Lion, the Witch, and the Wardrobe,” enjoying both evenings immensely!
Interestingly, I always hear that the next day was an especially good day at school.
This dynamic duo won the color game!
Since Josie is in middle school, her day begins early, with her bus coming at 7 am. She has a home health aide who comes at 5 am to take her through her routine on school mornings. Laura is studying nearby during that time. She keeps telling us we don’t need the home health aide because she enjoys getting Josie ready for the day herself, but we feel it’s important to safeguard her time and energy, including her studying time.
Joe and I come to give Josie goodbye hugs before she goes out the door to wait for the bus on the wheelchair pad at the end of our sidewalk. It’s light outside when she gets on the bus now, but not long ago it was still pitch black out there at 7 am!
I cried the first day I watched her get on the bus. I have felt a bond with Josie from the beginning, but am more head over heels the longer she’s here. I feel like I couldn’t possibly love her more if she had been born from my body. I love the talks we have when I go in to kiss her goodnight, sometimes gently helping her process her thoughts and feelings about the big changes in her life.
Mr. Zuber is a great teacher for her! She’s sometimes in his life skills class for math and reading and other specialized instruction, and sometimes integrated into mainstream classes. I knew Mr. Zuber and I would work well together when the first thing he said to me after we were introduced was, “I have high expectations for the kids and push them very hard.” And he does, and Josie is rising to those high expectations as we knew she would!
Do you know, she made the honor roll in her first marking period? We’re very proud of how hard she works and of her good attitude! She received a letter of congratulations from her congressman, a nice gesture!
As we prepared for Josie to join our family, we made a decision that once she gets home from school, that was going to be family time. Schoolwork, therapy–all that happens during the school day as much as possible. I even schedule her medical appointments during the last part of her school day or right afterward. (She’s now transitioned to a new insurance and new set of medical providers, including the Clinic for Special Children.) Once she gets home, that’s family time!
She came walking through the door on her first day home from school with a huge grin and a cheerful, “Hi, Mom!”
When I asked her how her first day was, she exclaimed, “My first day of school was AWESOME!!!” *accompanied by fist pump*
When she gets home from school, she always gets a drink and her meds while doing her homework at the kitchen table, then she sits next to me on the couch and tells me all about her day from the time she got on the bus to the time she got back off. All the other kids know–they had my attention all day and this is Josie’s time!
She quickly carved a niche for herself at this small, friendly country school, and is now a general favorite. Her vice-principal, Mr. Dolan, told me he was sitting in the cafeteria eating and chatting with her on one of her first school days. She took a long time to eat, and everyone else had finished up and gone when he teased her by saying, “Well, Josie, everyone else left! I guess that means you get to clean up the cafeteria!” She replied, “That’s not my work! I’m here to learn!”
She couldn’t take this ramp by herself at the beginning of the year.
At first, she didn’t understand what the moment of silence was for each school morning. Now she takes that time to ask Jesus to help her have a good attitude and work hard. During a recent conversation with her, I casually mentioned, “You know, like when you have a bad day at school…” She jumped in with, “I don’t have bad days at school!”
One day she found a note taped to her wheelchair that said, “Parking ticket…illegally parked…you owe Mr. Dolan $10.”
So after she got home, she looked at a real $10 bill and counterfeited her own, put it into an envelope and addressed it to Mr. Dolan. The next thing she knew, he’d given her another parking ticket, this time with a $100 fine! We told her to tell him we don’t have any $100 bills lying around here for her to copy, haha!
Jodi, the wonderful physical therapist who also treats Katie. On my request, she texted me this series of photos with instructions for the daily stretching routine she currently recommends for Josie. I forwarded them to the boss of Josie’s home health aide.
Josie really likes Jodi and the feeling is definitely mutual!
Jodi told me that the first time she saw Josie was a brief visit just to assess her. Then there was a delay of a couple of weeks before Jodi got in to do her first full physical therapy session.
She was surprised and tickled when she walked into the room and before she could say anything, Josie sang out, “Hi Jodi!”
She loves working with Josie and told me she wishes all the kids were as fun to work with as she is!
And then there’s our wonderful church family who grace our lives with love and support. What a gift they have been to us over the past almost five years; they’re now welcoming our newest daughter with open arms! When there’s a meal planned after the morning meeting, Josie packs an outfit to change into just like our other kids do, and takes along a tote bag full of activities she can do if she so chooses. If the weather is nice, she likes to take a walk outside with the other kids.
One Sunday after lunch, I was home from church with a couple of the children when I received a text from my friend Deanna. A marvelous video of Josie and Peter with huge smiles in the middle of a circle of family and church friends dancing the Lucky Seven English country dance. I wish so much that I knew how to move it from my texts to this blog post! Then Deanna sent a whole series of still photos.
Quotes from our text conversation:
Deanna: Thought you’d like to see the dancing. Josie is loving it! She was walking through the groups while they were dancing Ship’s Cook, grinning from ear to ear.
Susanna: Oh THAT makes me cry! I wondered how she would feel, knowing she can’t dance, but knowing she has to find her way in a world of abled people.
Deanna: Peter was her partner. So cute!
Susanna: To see she chooses to be happy right smack in the middle of everyone is beyond awesome.
Deanna: I knew you’d love it! She grinned and put herself all over the room in the middle of dancers and no one minded at all. Then we put her in the middle of Lucky Seven.
Susanna: That’s so cool! Thank you!
Deanna: Makes me very happy.
Susanna: Me too!!
Wish I could show you the Lucky Seven video, but here are a few shots of Ship’s Cook, anyway!
We joke that we are definitely “That Family” at our church and in our neighborhood. You know the kind I mean!
We don’t mind; our kids say “That Families” have more fun!
There certainly is never a dull moment around our place, I can say that for certain!
Maybe it’s part of our mission in life to make others feel like they really have it all together in contrast with us! Haha!
Here’s our girl doing what she calls the Josie-run! Every day that the weather permits and we don’t have other plans, she walks as long as she can, sometimes for a couple of hours. It’s so good for her; her strength and endurance has grown by leaps and bounds.
It’s a privilege to witness the special friendship between Laura and Josie. Laura tried to put some of it into words for me, and here’s an excerpt. “The different friends I’ve had have all taught me and expanded me. With Josie, there are some things she needs help with and some things I need help with and we sort of help each other along. There are some things that I’m teaching her and there are some things that she’s teaching me. She has a very simple faith and spending time with her is helping me to be more aware of the presence of God in every moment.”
Josie’s working so hard. She’s faithful with her exercise program, doing lots of sit-ups and push-ups every night. She’s also working on improving her balance and can stand alone (without holding on to her walker) for about four minutes now.
When she’s home from school, the children do activities she can also do. There’s plenty of other time for them to run in the woods and other activities that she’s unable to do. Her two favorite activities are doing messy projects and going really fast! We are praying that God will eventually provide a good used Gator-type vehicle with doors for her so the older kids can zoom her around our property where she needs to go, since we live on the side of a hill. Not too great a need for Him!
One of the younger boys summed it up well when he said, “Everybody likes helping Josie, because it’s fun to help her.” Everyone down to Stephen can help her in different ways. We have a lot of people power in this family!
Even Ben tries to help.
Laura decided Josie needs to know the Narnia stories, so she has begun reading through the series to her. Here she is reading to Josie to distract and entertain her while she was dealing with a mild stomach bug.
When she’s being one of the middle kids, they love being silly, making up stories, drawing pictures, playing games, being read to by Dad, swinging on the swings, going on walks, playing in the sandbox, playing with Legos together…
Sometimes she’s one of the older kids. Now that the new Ultimate Frisbee league season has begun, Josie can go with them when their Friday night game is scheduled for a reasonable hour. NOT one of the 10:40 pm games!
But tonight? GIRLS’ NIGHT!! WOO-HOOO!!
On the agenda for tonight: Pick Mindy up from work (and she treated us each to our choice of a Panera smoothie), eat Primo subs on the road, shop for some summer things each girl needed…
Putting all that ramp practice in physical therapy to good use in the real world~
Shhhh, don’t tell anybody, but our real goal for the night was just to goof off and have fun! And Josie makes everything more fun. She’s just plain hilarious–we never know what will come out of her mouth next! Her latest was telling us that Laura’s Bible smells like holiness, haha!
Josie, oh my word! Wait for us! We can’t keep up with you, girl!
“Happiness, happiness!” says Josie!
Among her many other talents, Laura is gifted at figuring out how things work and fixing them, so putting this hanging rack together is one of her kinds of fun.
“She was able to do everything,” Laura told me later. Some good skills for a girl like Josie who wants to help people choose features of their own wheelchairs, help build wheelchairs, and work for Wheels for the World when she grows up.
When it’s Reading Night, Game Night, or Movie Night at our house, Josie had the idea that it would be smart to change into her pj’s before supper, since it can take her a while to dress herself and she doesn’t want to miss any of the fun later on. Every night, it’s her responsibility to choose her pj’s and also her outfit for the next day. She does nearly all her own self care and always does it without being reminded, with only very minor stand-by assistance needed.
She has household responsibilities like everyone else does. The only difference is that she was begging for some, which I must say was a new experience for me! She helps to set the table, rinses dirty dishes for the dishwasher, helps fold laundry, scrubs potatoes and does other food prep. Of course, she’s responsible to put her own dirty laundry in the basket and make her bed, things like that. She takes these very seriously, and if she has an especially tall stack of dishes to rinse and I ask her if it’s too much (she has to balance herself at the edge of the counter to have her hands free, so it takes energy and focus), she sings out cheerfully, “I can handle it!”
On this night we were celebrating Joshua’s 19th birthday. Time to make some Golden Fruit Salad!
Laura chopped the Golden Delicious apples and opened the cans of pineapple; Josie cut up the bananas and squeezed in the can of orange juice concentrate…
…and stirred it all up.
Isn’t she adorable? We are all smitten by this girl! She is so alive and has such a big personality! When she’s gone, she leaves a big gap in the family!
I tell her that there used to be this huge Josie-sized hole in our family we didn’t know was there until she came and filled it up.
There you have it! Golden fruit salad for big brother Joshua’s birthday party!
And here’s the birthday gift Laura made for her. Josie loves helping make food! There’s a lot she can do and she’s enthusiastic about gaining more skills.
I told her months ago that I don’t see her as disabled and we weren’t going to treat her as if she was disabled.
It can be so hard to explain to someone who doesn’t already get it! It’s like this. Over here is Josie, and over there is the disability. The essence of the human being who is Josie is a separate entity from the disability-related stuff that comes along with her because her body has cerebral palsy. Our relationship with Josie has nothing to do with Josie’s cerebral palsy like my friendship with Toni has nothing to do with Toni’s paraplegia.
She’s catching on. The other day, she stated, “I don’t really feel like I have a disability.”
Breakfast at church after the sunrise service this morning~
What a privilege it is to be allowed to provide the supports under this precious young woman to enable her to spread her wings and fly. What she gives back into our lives is so priceless that no effort or sacrifice feels hard to us. It makes us all so happy to see her enjoy experiences and we keep thinking of more adventures we want her to have!
You are a treasure, Josie, and we love you more than words can say! We thank God for bringing you into our family!!!