Last fall we shared an open letter with families in McFarland to give anyone interested an introduction to and update about our daughter Anna. We received such positive feedback after sharing that post that we decided to do it again, especially as Anna's life progresses and she begins to meet different physical milestones.
This year our daughter, Anna Mischnick, is in Mr. Krueger's 4th grade class at Waubesa Intermediate School and is in the D related arts group. She uses a wheelchair for most of her school day, but can also be seen using her walker in the hallways, during related arts classes, on the playground, or out in the community.
As Anna gets older, she may chose to live her life more privately, but for the time being she has a similar opinion to ours in that answering others' questions makes her life easier since it helps others become more comfortable around her.
We not only realize that many people who have known and interacted with Anna in the last three years like to hear how she is doing, but we also recognize that new families move into the community every year and they may have questions about Anna.
First we will share a brief summary of Anna's story and then we will address the common questions we are asked these days.
Prior to February of 2014, Anna was a happy, healthy six and a half year old. In early February of Anna's 1st grade year, she was diagnosed with high-risk metastatic medulloblastoma, one of the more common forms of childhood brain cancer. The tumor was located in her cerebellum, the part of the brain that controls and regulates muscle coordination, and the cancer had spread throughout her brain and the length of her spinal cord.
Anna's treatment included brain surgery to remove as much of the tumor as possible, 6 weeks of high-dose radiation therapy, and an additional 6 months of chemotherapy. Through the nine months of Anna's treatment, she experienced several complications, both common and uncommon. Anna completed her treatments in November of 2014. Although her cancer is officially considered in remission, she will continue to experience many late effects of her treatments as she grows older.
The most noticeable effects of Anna's cancer and its treatments are related to her neuromuscular system. In early May of 2014 when Anna was finally discharged from her initial 3-month hospital stay, her muscle strength and coordination was similar to that of a newborn's. All of her muscles were affected: gross motor, fine motor, visual motor, oral motor, etc. Her sense of balance was also back to square one.
Since Anna's treatments were completed almost two years ago, she has been working hard to regain many of the physical skills she lost. For some, it has helped to think of Anna's recovery as similar to someone recovering from a stroke.
Up until this summer, Anna chose to use her wheelchair as her means of mobility whenever we left our home. At home, however, she was working through the stages of physical development typical with young children. Sitting, scooting, crawling, kneeling, standing, etc.
This past July, Anna participated in a 3 week therapy program at a local pediatric therapy center. Through that experience, she became much more confident and skilled at using her walker. Now she often chooses to use her walker when we are out of the house. At school, however, she mostly uses her wheelchair so she can focus her energies on schoolwork (and friends).
Speaking of school, Anna's general thinking and cognitive abilities are as sound as they ever were, although a bit slower. She is included in as many of the regular classroom activities as possible, but her workload is sometimes reduced to accommodate her slower pace.
We will forever be grateful to our local McFarland community and our church community for supporting our family in countless ways during our many months of crisis in 2014. Not only were the tangible aspects of support like meals, rides, babysitting, and gardening help appreciated, but the prayers and faith support will always be treasured.
Listed below are some of the more common questions we are asked and our typical answers.
What's wrong with her? Or why is she in a wheelchair?
Anna's cancer and its treatments were focused on the part of her brain that makes her muscles move. She has had to relearn how to use her muscles again, just like a baby has to learn how to use their muscles. Wherever Anna is, we have to decide on the safest and most appropriate way for her to move. At school, using her wheelchair is often fastest and easiest.
Why did Anna get cancer? Or what caused Anna's cancer?
That's the million dollar question, isn't it? I can't tell you was caused it, but I can tell you what DIDN'T cause it. Anna did not get cancer because of anything she did, or didn't do, because of food she ate, or didn't eat, because she caught it from someone/something, or because of family history. At this time, there are very few known carcinogens for most forms of childhood cancer. Most of the kids who have cancer fall under the category of "cause unknown".
What's that (in reference to her walker)?
The blue contraption Anna often has with her is a reverse pediatric rehabilitation walker. Although the color is cool, Anna didn't choose it. With this brand, different sizes come in different colors. Unlike adult walkers, pediatric walkers are often ones that kids pull behind them instead of push in front of them. I won't go into all of the therapy reasons for this, but just know there are many :) In general, walkers help keep people safe who have a poor sense of balance.
Why doesn't Anna use her walker all the time?
At this time, it takes a lot of work and energy for Anna to use her walker. In order to have enough mental energy to learn and socialize at school, Anna has chosen to only use her walker for part of her day. In addition, Anna walks more slowly in a walker than most 4th graders walk. It wouldn't make sense for her to use it all the time at school. And finally, the walker is awkward to use in small spaces. Anna would probably run into too many people and things if she were to use her walker in the classroom :)
Why does Anna sometimes have black tape on the backs of her legs?
It's kinesiotape and all the cool athletes are using it :) Just kidding. It actually IS kinesiotape and it has a real purpose for Anna's rehab therapy. The tape provides some of her leg muscles with a gentle reminder of how they are supposed to be working.
Why isn't Anna in school on Monday mornings?
This school year Anna starts her week with two hours of therapy at a local pediatric therapy center.
What's that (in reference to her g-tube)?
It's a tube that goes directly into Anna's stomach. Anna's cancer and it's treatments affected her ability to chew and swallow food. For almost two years, Anna wasn't able to eat anything through her mouth so all of her water and nutrition went directly into her stomach through a g-tube. At this point, Anna can eat some food orally, but she still needs to have the majority of her water and nutrition go through her g-tube.
Why is Anna so short? (Okay, it's not that obvious yet, but it won't be long until Anna's sister Kate, who is two years younger than Anna, is the taller of the two.)
Any kid who goes through chemo treatments stops growing for a short time. Their body is working too hard at getting better to bother spending energy on growing. Some kids who have radiation to their brain experience a side effect in which their bodies can't make enough of the chemical that makes them grow. This may or may not be the case with Anna. We will just have to wait and see.
What's with Anna's hair?
Anna lost all of her hair, eyelashes, and eyebrows due to her treatments. Everything started growing back very slowly in 2015. However, the intensity of the radiation treatments damaged the parts of her skin that make hair. In the area where Anna received the most radiation (the back of the skull), her hair is very, very thin. Most of Anna's classmates have probably seen her main scar back there, too. The rest of Anna's hair was damaged similar to that of someone who colors their hair a few too many times. Anna gets to use special shampoo to help get her hair back to the shape of a typical 4th grader.
So how are you guys (in reference to the family as a whole)?
Good. We have had a few years to adjust to this new normal, and we have figured out how to live life and have fun doing it. We take vacations, we visit family, we hang out at home. We just do things at a bit of a different pace than other families who have kids the same ages as ours.
And finally, is there anything I can do to help?
Good question. Our family is in a pretty good place right now and we are managing life fairly well. However, lots of other families dealing with childhood cancer are not. The Badger Childhood Cancer Network is an organization that helps families who are dealing with or have dealt with a childhood cancer diagnosis. (We actually know of a few kids who have chosen to accept donations for this organization instead of receiving gifts at a birthday party; what a great idea!) If donating money is not your cup of tea, check out the recent post on this blog titled The STAR Act. It provides ways to contact your local congressional leaders regarding a bill currently in Congress that provides some much needed funding and representation for childhood cancer patients and survivors.
Thank you for taking the time to read and understand Anna a little bit better. Please let us know if you have ever have other questions. We've learned a lot in the last few years and we don't mind sharing it, if it helps others feel more comfortable around Anna.
Friday, September 30, 2016
Wednesday, September 28, 2016
One thing needful
"But one thing is needful: and Mary has chosen that good part, which shall not be taken away from her." Luke 10:42
Early in the summer, one of the sermons at our church was on the story of Mary and Martha. Since that time, "one thing needful" has been on my mind.
One of the things I love about hearing/reading Bible stories again and again is how different parts have different meanings at different times in my life. I don't know how many times I have heard the story of Mary and Martha, but this summer I listened to it with different ears.
In the midst of therapy goals, educational goals, social goals, medical goals, etc., one thing is truly needful in the life of our daughter. In fact, only one thing is truly needful in the lives of all three of our children and in our lives as adults ... that we love Jesus and trust Him for our salvation.
Whether or not Anna walks independently, or eats completely orally, or learns as her peers learn, or has her own group of friends, one thing is needful.
Whether or not our children "succeed" in life as the world defines success, one thing is needful.
This summer when I would get overwhelmed with the work of coordinating the medical needs, the therapy needs, the educational needs, Anna would often pipe up in the background by singing along with a song on the Christian radio station. It was always a good reminder that one thing is needful.
We are glad, of course, with all of the progress and goals met by Anna, Kate, and Ethan, but keeping "one thing needful" in mind, we have a certain peace about the rest of life. Of that we are thankful.
Early in the summer, one of the sermons at our church was on the story of Mary and Martha. Since that time, "one thing needful" has been on my mind.
One of the things I love about hearing/reading Bible stories again and again is how different parts have different meanings at different times in my life. I don't know how many times I have heard the story of Mary and Martha, but this summer I listened to it with different ears.
In the midst of therapy goals, educational goals, social goals, medical goals, etc., one thing is truly needful in the life of our daughter. In fact, only one thing is truly needful in the lives of all three of our children and in our lives as adults ... that we love Jesus and trust Him for our salvation.
Whether or not Anna walks independently, or eats completely orally, or learns as her peers learn, or has her own group of friends, one thing is needful.
Whether or not our children "succeed" in life as the world defines success, one thing is needful.
This summer when I would get overwhelmed with the work of coordinating the medical needs, the therapy needs, the educational needs, Anna would often pipe up in the background by singing along with a song on the Christian radio station. It was always a good reminder that one thing is needful.
We are glad, of course, with all of the progress and goals met by Anna, Kate, and Ethan, but keeping "one thing needful" in mind, we have a certain peace about the rest of life. Of that we are thankful.
Tuesday, September 20, 2016
Updates
Time for a few individual updates.
Ethan:
Mr. Almost Four is so much fun (and sometimes challenging). He still brightens up the day of most adults he sees. His little comments and goofy faces are the best. It's hard to be grumpy when Ethan's around. (Unless, of course, he's grumpy.) Here are a few of his more memorable phrases lately. I need to do a better job of writing them down because I know there are more and better ones, but this is all I've got right now.
"I want our whole family home."
"I'm a fast healer."
"Like a million big?"
"Is there school today? No? Then I can play with Kate! Yay for Kate!"
"Unbleed!" (This is how you make a cut stop bleeding.)
"I love you all the way to China and to the whole university and to Pluto and back." (We think he means universe instead of university :)
Ethan enjoyed making applesauce with me all canning season. He turned the handle on the squeezo strainer just about every time; I think he liked the mechanical aspects of it.
Mr. Ethan also learned how to ride a bike without training wheels this week. Seriously?!? Who would have thought one of our children would hit this milestone so early? I guess having daily access to pediatric therapy equipment helps your vestibular system develop a bit ahead of what is typical.
About a week ago, Kate pulled out our cheap version of a balance bike (a.k.a. a garage sale 12 inch bike with the pedals removed). Ethan took to that pretty well until the weekend when he came down with his first major cold in awhile. Then on Tuesday while Kate was home sick with the same virus, we took the training wheels off of his "real" bike and tried it out. After only a half hour or so, he figured it out. By the end of the day, this is what he looked like:
Hmmm ... I'm a little uncertain about what is in this 3-year-old's future, but right now he is SO proud of himself. (After a little digging, we found this awesome article online that mirrors Ethan's experiences almost exactly. Check it out if you have a chance! How I Didn’t Teach My Three-Year-Old Son to Ride His Bike Without Training Wheels)
Kate:
She's doing great, in spite of being home sick with a cold today. She's shining at school, or at least we think she is at this point. She seems to have hit her stride with how to manage the "drawing inside the lines" aspects of school, which can be challenging for our free spirited daughter.
Yesterday after school we had an incredible thunderstorm complete with hail and torrential downpours. After the skies cleared up and we all checked out the rainbow, Kate discovered the ditch in the front yard; it only ever fills with water during crazy rainstorms. I couldn't get her back inside until Matt came home ... too much fun to be had splashing, exploring, and sending sticks through the culverts.
The water was probably 1-2 feet deep and 3-4 feet wide during the storm, but it had trickled down to this by the time I grabbed a camera to take any pictures.
McFarland hosted its annual Family Festival this past weekend. Since Ethan and I were feeling under the weather on Saturday, Matt took the girls to some shows and then the rides. They all had fun watching the dancers and listening to the band, and Kate discovered that she really likes carnival rides. Kate found a couple of friends from school and apparently they had a blast riding rides together for awhile.
Anna:
Anna seems to have settled into the school routine. After a couple of weeks to adjust and "get her school mojo back" (in the words of her awesome aide), things are running smoothly. Anna is excited to be reading and filling out her reading log (independently, for the most part, this year!), would rather do math than anything else, and seems pretty happy about school in general. And, Anna has a great team around her (AGAIN!) this year. Big sigh of relief.
Anna was looking forward to the parade on Sunday that is a highlight of the McFarland Family Festival. When she was in preK, she walked the parade route with her preschool, waving and smiling the whole way. This year, she plopped herself on a curb and smiled and waved at every person she recognized (which was quite a few). Then she suggested that the kids make candy creations with the HUGE bag of candy they collected from the parade.
It was really an insane amount of candy.
But the candy creations kept everyone occupied for a good portion of the afternoon, and we still have a lot of candy left over for more candy creations when the weather turns colder :)
Mom:
The harvest is almost done. I finished up with most of the apples this past weekend and started cleaning out the garden. Although the wet weather these last few months took its toll on our tomatoes and squashes, it boosted our fruit harvest. The grapes, pears, and apples were all excellent harvests and our fall raspberries have been plentiful (as long as I keep ahead of the fruit flies). This year we planted a second crop of broccoli and pea pods. These, along with our lingering green beans and pole beans, have kept us supplied with fresh green vegetables this September.
This photo doesn't include the frozen food, or the 7 quarts of applesauce I canned today, or any of our pumpkins, potatoes, sweet potatoes, onions, or garlic, or any of the pears on our late-harvest tree. Each of the jars shown has two lined up behind it. I think this should last us awhile, but by next June each of those jars will probably be empty.
Dad:
Work has been busy, but Matt has been able to keep biking to work a few days a week in addition to mountain biking one evening each week. He has also started taking his fall Fridays off. So far those Fridays have included a lot of harvesting work and other household type things. Maybe he'll get to tackle some of his other projects one of these days.
Let's hope that our healthy summer keeps our immune systems up as we are exposed to more and more yucky germs. This cold was rough when people were in the thick of it, but it passed through very quickly for a cold.
Ethan:
Mr. Almost Four is so much fun (and sometimes challenging). He still brightens up the day of most adults he sees. His little comments and goofy faces are the best. It's hard to be grumpy when Ethan's around. (Unless, of course, he's grumpy.) Here are a few of his more memorable phrases lately. I need to do a better job of writing them down because I know there are more and better ones, but this is all I've got right now.
"I want our whole family home."
"I'm a fast healer."
"Like a million big?"
"Is there school today? No? Then I can play with Kate! Yay for Kate!"
"Unbleed!" (This is how you make a cut stop bleeding.)
"I love you all the way to China and to the whole university and to Pluto and back." (We think he means universe instead of university :)
Ethan enjoyed making applesauce with me all canning season. He turned the handle on the squeezo strainer just about every time; I think he liked the mechanical aspects of it.
Mr. Ethan also learned how to ride a bike without training wheels this week. Seriously?!? Who would have thought one of our children would hit this milestone so early? I guess having daily access to pediatric therapy equipment helps your vestibular system develop a bit ahead of what is typical.
About a week ago, Kate pulled out our cheap version of a balance bike (a.k.a. a garage sale 12 inch bike with the pedals removed). Ethan took to that pretty well until the weekend when he came down with his first major cold in awhile. Then on Tuesday while Kate was home sick with the same virus, we took the training wheels off of his "real" bike and tried it out. After only a half hour or so, he figured it out. By the end of the day, this is what he looked like:
Hmmm ... I'm a little uncertain about what is in this 3-year-old's future, but right now he is SO proud of himself. (After a little digging, we found this awesome article online that mirrors Ethan's experiences almost exactly. Check it out if you have a chance! How I Didn’t Teach My Three-Year-Old Son to Ride His Bike Without Training Wheels)
Kate:
She's doing great, in spite of being home sick with a cold today. She's shining at school, or at least we think she is at this point. She seems to have hit her stride with how to manage the "drawing inside the lines" aspects of school, which can be challenging for our free spirited daughter.
Yesterday after school we had an incredible thunderstorm complete with hail and torrential downpours. After the skies cleared up and we all checked out the rainbow, Kate discovered the ditch in the front yard; it only ever fills with water during crazy rainstorms. I couldn't get her back inside until Matt came home ... too much fun to be had splashing, exploring, and sending sticks through the culverts.
The water was probably 1-2 feet deep and 3-4 feet wide during the storm, but it had trickled down to this by the time I grabbed a camera to take any pictures.
McFarland hosted its annual Family Festival this past weekend. Since Ethan and I were feeling under the weather on Saturday, Matt took the girls to some shows and then the rides. They all had fun watching the dancers and listening to the band, and Kate discovered that she really likes carnival rides. Kate found a couple of friends from school and apparently they had a blast riding rides together for awhile.
Anna:
Anna seems to have settled into the school routine. After a couple of weeks to adjust and "get her school mojo back" (in the words of her awesome aide), things are running smoothly. Anna is excited to be reading and filling out her reading log (independently, for the most part, this year!), would rather do math than anything else, and seems pretty happy about school in general. And, Anna has a great team around her (AGAIN!) this year. Big sigh of relief.
Anna was looking forward to the parade on Sunday that is a highlight of the McFarland Family Festival. When she was in preK, she walked the parade route with her preschool, waving and smiling the whole way. This year, she plopped herself on a curb and smiled and waved at every person she recognized (which was quite a few). Then she suggested that the kids make candy creations with the HUGE bag of candy they collected from the parade.
It was really an insane amount of candy.
But the candy creations kept everyone occupied for a good portion of the afternoon, and we still have a lot of candy left over for more candy creations when the weather turns colder :)
Mom:
The harvest is almost done. I finished up with most of the apples this past weekend and started cleaning out the garden. Although the wet weather these last few months took its toll on our tomatoes and squashes, it boosted our fruit harvest. The grapes, pears, and apples were all excellent harvests and our fall raspberries have been plentiful (as long as I keep ahead of the fruit flies). This year we planted a second crop of broccoli and pea pods. These, along with our lingering green beans and pole beans, have kept us supplied with fresh green vegetables this September.
This photo doesn't include the frozen food, or the 7 quarts of applesauce I canned today, or any of our pumpkins, potatoes, sweet potatoes, onions, or garlic, or any of the pears on our late-harvest tree. Each of the jars shown has two lined up behind it. I think this should last us awhile, but by next June each of those jars will probably be empty.
Dad:
Work has been busy, but Matt has been able to keep biking to work a few days a week in addition to mountain biking one evening each week. He has also started taking his fall Fridays off. So far those Fridays have included a lot of harvesting work and other household type things. Maybe he'll get to tackle some of his other projects one of these days.
Let's hope that our healthy summer keeps our immune systems up as we are exposed to more and more yucky germs. This cold was rough when people were in the thick of it, but it passed through very quickly for a cold.
Sunday, September 18, 2016
The STAR Act
In case you are looking for a positive way to influence your congressional leaders this election season, please keep reading.
The STAR act, a bill outlining support and funding for people affected by childhood cancer, is in committee in Congress right now.
Here's how the language of the bill begins:
"Approximately 1 in 285 children in the United States will be diagnosed with cancer before their 20th birthday.
As a result of disparities in the delivery of cancer care, minority, low-income, and other medically underserved children are more likely to be diagnosed with late stage disease, experience poorer treatment outcomes, have shorter survival time with less quality of life, and experience a substantially greater likelihood of cancer death."
The STAR act, a bill outlining support and funding for people affected by childhood cancer, is in committee in Congress right now.
Here's how the language of the bill begins:
"Approximately 1 in 285 children in the United States will be diagnosed with cancer before their 20th birthday.
In 1960, only 4 percent of children with cancer survived more than 5
years, but today, cure rates have increased to over 80 percent for
children and adolescents under age 20.
By 2020, the population of childhood cancers survivors is expected to be 500,000 individuals.
As many as two-thirds of childhood cancer survivors are likely to
experience at least one late effect of treatment, with as many as
one-fourth experiencing a late effect that is serious or
life-threatening.
As a result of disparities in the delivery of cancer care, minority, low-income, and other medically underserved children are more likely to be diagnosed with late stage disease, experience poorer treatment outcomes, have shorter survival time with less quality of life, and experience a substantially greater likelihood of cancer death."
These are only a few of the 15 findings listed in the beginning section of the STAR act, currently "on hold" in Congress.
Many families impacted by childhood cancer could recite these facts and more from memory (such as childhood cancer research receives less than 1% of government funding from the NCI and less than 4% from the NIH). These families could also give personal stories from the heart that go beyond the facts and figures. Leaders in the children's oncology community across the board have given their input and ultimately their support for the STAR act.
S stands for Survivorship. Those half-million survivors are going to need systematic follow-up care throughout their lifetime.
T stands for Treatment. Although many of the "common" childhood cancers have high cure rates, many more do not, especially if the cancer is rare.
A stands for Access. We were lucky with how quickly and easily Anna received intense medical treatments. Many kids are not so lucky.
R stands for Research. "Virtually all progress against cancer—in both children and adults—has
been founded in basic research, often in areas not directly related to
the disease ... Pharmaceutical companies have been reluctant to develop drugs
appropriate for children with cancer because it requires making an
investment in products that are unlikely to cover the high costs
associated with their research, development, marketing, and distribution." (Again, from the first section of the STAR act.)
All of the leading children's oncology groups are backing this bill. It has received plenty of bipartisan support. You can even access the exact language of the bill using the above link. It's pretty wordy, but it includes such ideas as including a pediatric oncologist on national oncology committees. Sounds like a good cause, right?
But ... it was introduced 15 months ago. And it's stalled again in the House Energy and Commerce Committee. Because, in an election year, it's not a priority.
YOU can help make it a priority.
Start by checking out this map.
- A gold star means, you should say “Thank You!” Your Rep is already a co-sponsor. (Dane County folks ... Mark Pocan is already a co-sponsor.)
- A black telephone means you should reach out (call, email, and tweet) and invite your Rep to sign on.
- A red telephone means your Rep is on the E&C Committee and hasn’t yet signed on. These are important targets!
If you want to send a form letter through the mail, you can visit this site.
If you'd rather send an email, you can visit this site. You simply put in your zip code and, viola, the email is already drafted and ready to send to your representative.
If you choose this route, remember to cross check whether or not your rep is already a sponsor. If they are, you should probably change the language to say "Thank you for your co-sponsorship of the Childhood Cancer STAR Act" :)
Feel free to include the following paragraphs in the section that looks like this: "[[[[[Please include your story of why you have gotten involved in childhood cancer and why it matters to you that they co-sponsor this bill.]]]]]"
"A young girl who I know was diagnosed with high-risk metastatic medulloblastoma when she was 6 1/2. She underwent brain surgery, six weeks of total head and spine radiation, and 6 cycles of high-dose chemotherapy. At almost two years out of treatment, her cancer is considered in remission.
By some data measuring tools, she is considered one of the lucky ones. Although she was diagnosed late in the game, her cancer was considered fairly common and she had easy access to receive excellent medical treatments.
However, she will continue to experience multiple late-effects, both physical and cognitive, due to her treatments. Her childhood was taken from her at a very young age. Through the passage of the STAR Act, her opportunities in the future will look better and brighter because of the research and follow-up care included in the bill.
No child should ever experience any type of cancer. But, for those that do, they should not be asked to fight this battle alone."
If you choose this route, remember to cross check whether or not your rep is already a sponsor. If they are, you should probably change the language to say "Thank you for your co-sponsorship of the Childhood Cancer STAR Act" :)
Feel free to include the following paragraphs in the section that looks like this: "[[[[[Please include your story of why you have gotten involved in childhood cancer and why it matters to you that they co-sponsor this bill.]]]]]"
"A young girl who I know was diagnosed with high-risk metastatic medulloblastoma when she was 6 1/2. She underwent brain surgery, six weeks of total head and spine radiation, and 6 cycles of high-dose chemotherapy. At almost two years out of treatment, her cancer is considered in remission.
By some data measuring tools, she is considered one of the lucky ones. Although she was diagnosed late in the game, her cancer was considered fairly common and she had easy access to receive excellent medical treatments.
However, she will continue to experience multiple late-effects, both physical and cognitive, due to her treatments. Her childhood was taken from her at a very young age. Through the passage of the STAR Act, her opportunities in the future will look better and brighter because of the research and follow-up care included in the bill.
No child should ever experience any type of cancer. But, for those that do, they should not be asked to fight this battle alone."
Thanks for whatever help you are willing to give!
Friday, September 9, 2016
Back to School
Well, we're a week into the school year, for better or for worse. We have enough of life going on right now that it seems to take me at least a week to get pictures uploaded and make the time to write anything. I guess that's just how it goes sometimes.
During our back-to-school time this year we have experienced the least stress as a family about returning to school that we have probably ever had. No one was starting at any new school and Anna's aide is the same as last year. It's almost like we've done this before :) Each of us (or at least those of us who are most directly involved) have just slipped back into the "other" routine.
The first day of school for me was bitter sweet. I honestly didn't get tired of my kids this summer. I will definitely miss the girls while they are away. Sure, it's nice to have an "easier" pace when it comes to running errands, but we had a good summer and I wasn't ready to send them back. I love hearing them play in another room, having their help with different things around the house, and having relaxed meals together.
But, it's a blessing to see how independent they are becoming. More than once in the past week I've seen Kate spread her wings. In comparison to the beginning of kindergarten, she is simply flying this year. Although Kate was not looking forward to school starting (not enough play time in her opinion), she seems to have found reasons to like school again.
Anna, too, is worlds above where she was two years ago, even last year at this time. As with just about everything in Anna's life, though, this transition will take some time and patience. She was thrilled to start school, but we will have to see how the rest of September goes before I can give a verdict on how the whole adjustment process has gone.
Ethan is home with me again this year. Although he is three (almost four) and is old enough for different local preschool programs, we have opted to keep him home one more year. When people ask me the "preschool" question, I usually tell them that we're not worried about his social or academic development and we can find plenty of free activities in and around the community. But in all honesty, I'm not ready to give him up yet. These years before the structure of school are so short; he's too much fun to share with a preschool yet :)
Much of my life in the last week, in addition to that whole school thing, has revolved around the ripening fruit in our yard. Grapes, pears, and apples galore. At least this boy likes to help make applesauce ... okay, and eat it, too.
This past Monday happened to be my birthday. For the first time in years, no one in the family had any other obligations ... no school, no appointments, no BCCN superhero run, nothin'. The day was kind of about me :) Of course part of the day involved canning fruit, but I like to do that kind of thing. The kids humored me in the afternoon with what we thought was our last time out in the pool. Even after a few sunny days, the water was COLD. But we braved it for a short time at least. The family took good care of me that day.
Actually, Ethan and I ventured out to the pool again on Tuesday afternoon while the girls were at school and we had SO much fun. Then the kids and I managed to get out there once more on Thursday after school. After all of the cool, rainy weather of August, the first week of school turned out to be one of the warmest for playing in the water!
Time for Prayers
Thanksgiving
Please give thanks that this year's transition to school has gone so smoothly.
Please thank God that so many members of Anna's team are the same this year as they were last year.
Please give thanks for all of the friends, new and old, who interact each day with Anna.
Please thank God for all of the delicious fruit that is ripe in our yard and for the ability to preserve it.
Please continue to thank God for all of the continued progress that Anna is making.
Please continue to thank God for the wisdom and strength to tackle all the parts of our lives.
Requests
Please ask God to guide the teachers and staff at the girls' schools. With different staffing changes and new students, all educators could use God's guidance.
Please pray that Anna continues to make her transition to 4th grade smoothly.
Please ask God to continue to bless Anna with a desire to do her best, even when it is hard work.
Please pray that God keeps our kids safe, in their minds, their bodies, and their hearts.
Please continue to pray that Matt and I have the wisdom and strength to keep going each day.
During our back-to-school time this year we have experienced the least stress as a family about returning to school that we have probably ever had. No one was starting at any new school and Anna's aide is the same as last year. It's almost like we've done this before :) Each of us (or at least those of us who are most directly involved) have just slipped back into the "other" routine.
The first day of school for me was bitter sweet. I honestly didn't get tired of my kids this summer. I will definitely miss the girls while they are away. Sure, it's nice to have an "easier" pace when it comes to running errands, but we had a good summer and I wasn't ready to send them back. I love hearing them play in another room, having their help with different things around the house, and having relaxed meals together.
But, it's a blessing to see how independent they are becoming. More than once in the past week I've seen Kate spread her wings. In comparison to the beginning of kindergarten, she is simply flying this year. Although Kate was not looking forward to school starting (not enough play time in her opinion), she seems to have found reasons to like school again.
Anna, too, is worlds above where she was two years ago, even last year at this time. As with just about everything in Anna's life, though, this transition will take some time and patience. She was thrilled to start school, but we will have to see how the rest of September goes before I can give a verdict on how the whole adjustment process has gone.
Ethan is home with me again this year. Although he is three (almost four) and is old enough for different local preschool programs, we have opted to keep him home one more year. When people ask me the "preschool" question, I usually tell them that we're not worried about his social or academic development and we can find plenty of free activities in and around the community. But in all honesty, I'm not ready to give him up yet. These years before the structure of school are so short; he's too much fun to share with a preschool yet :)
Much of my life in the last week, in addition to that whole school thing, has revolved around the ripening fruit in our yard. Grapes, pears, and apples galore. At least this boy likes to help make applesauce ... okay, and eat it, too.
This past Monday happened to be my birthday. For the first time in years, no one in the family had any other obligations ... no school, no appointments, no BCCN superhero run, nothin'. The day was kind of about me :) Of course part of the day involved canning fruit, but I like to do that kind of thing. The kids humored me in the afternoon with what we thought was our last time out in the pool. Even after a few sunny days, the water was COLD. But we braved it for a short time at least. The family took good care of me that day.
Actually, Ethan and I ventured out to the pool again on Tuesday afternoon while the girls were at school and we had SO much fun. Then the kids and I managed to get out there once more on Thursday after school. After all of the cool, rainy weather of August, the first week of school turned out to be one of the warmest for playing in the water!
Time for Prayers
Thanksgiving
Please give thanks that this year's transition to school has gone so smoothly.
Please thank God that so many members of Anna's team are the same this year as they were last year.
Please give thanks for all of the friends, new and old, who interact each day with Anna.
Please thank God for all of the delicious fruit that is ripe in our yard and for the ability to preserve it.
Please continue to thank God for all of the continued progress that Anna is making.
Please continue to thank God for the wisdom and strength to tackle all the parts of our lives.
Requests
Please ask God to guide the teachers and staff at the girls' schools. With different staffing changes and new students, all educators could use God's guidance.
Please pray that Anna continues to make her transition to 4th grade smoothly.
Please ask God to continue to bless Anna with a desire to do her best, even when it is hard work.
Please pray that God keeps our kids safe, in their minds, their bodies, and their hearts.
Please continue to pray that Matt and I have the wisdom and strength to keep going each day.
Saturday, September 3, 2016
End of Summer
Our last week of summer we decided to have some fun. The kids and I hadn't had the opportunity to do many, if any, "field trips" over the course of the summer because of the way our schedule worked out. By the time we had a free day during June and July, all we wanted to do was stay home. The beginning of August had too many appointments, so the end of August was our time.
We turned it into a special end for this summer season :) On Tuesday, August 23, GE had a family picnic in the afternoon. Matt and his maker's team had worked hard to set up a handful of projects for kids/families to do so we were all looking forward to spending the afternoon with him.
We had lunch, then when we left Matt and Anna to make a kite together, the other two kids and I checked out the bounce house and a zoomobile, before heading back to the lawn games.
While Anna was finishing her kite, Kate, Ethan, and I took turns flying our kite from home. Kate helped Anna get hers in the air, too!
Matt decided to bring along the go-kart for Anna to drive around. Constantly going over rough ground isn't a lot of fun in a wheelchair or a walker. But a go-kart? Sure!
The kids had fun and Matt really enjoyed showing us around and having a day off of work that wasn't really a day off :)
Then on Wednesday the kids and I did a day trip down to the Rockford Discovery Center. We dubbed this one "a hit" and will plan to return on another rainy day. The museum was compact and engaging enough that I could keep an eye on everyone at the same time, even if they were interested in different exhibits. We didn't even have enough time to explore everywhere!
Ethan loved the tots area!
Anna and I could have spent hours making different pictures with this simple rubber band set-up.
Kate described this ball maze in detail to Matt over dinner. She and Ethan thoroughly enjoyed finding different ways to send the balls up and down.
Who doesn't love a good farm exhibit?
The rain cleared out enough in the afternoon for the outdoor space to open up. You could spend an entire day just exploring out there!
Just before we left, we discovered the full body push-pin wall. Actually, I don't know what it's called, but our small hand-held version has held the attention of each of our kids for endless periods of time, so you can imagine how much fun a large scale one would be.
Of course we all did face prints. The best part is that we can tell which kid is which just by their prints.
Ethan ... the chubby cheeks still give him away.
Anna ... I spy some glasses and knee prints.
And Kate ... we can recognize that smile anywhere :)
Even the drive down and back was filled with loud laughter and silly antics in the van. The day will go down in my memory banks as one of the better ones of the summer :)
On Friday of that week, Matt joined us for a field trip to the Milwaukee County Zoo. I have been wanting to take the kids there since Ethan was a baby, but it never worked until this year. A fun trip, for sure, but I'm glad Matt was along. This one would have been a bit trickier if I had done it alone.
Here's a few of the animals we were able to see.
We took in a couple of shows as well. The Birds of Prey show provided a much needed sitting break for some of us.
As we have learned, handicap seating can have its benefits, as well as its drawbacks. In this show, not only were the seats right up front, but they were also in the direct flight line from one trainer to another. Many of the birds flew just a few feet over our heads as they were in transit to their next post. It was a little nerve-wracking for some of us :)
Our other show was called Oceans of Life, featuring seals and sea lions. I think Kate enjoyed herself the most for this show, not only because she could see the marine animals up close, but also because she was able to see a number of trainers working with the animals.
We ended our day with a train ride.
Everyone was about at the end of their energy by this point.
Our ride home that day was much quieter than the ride home on Wednesday :)
The days we weren't out and about doing activities, we were holed up at home. The kids played, played, and played some more while I canned, canned, and canned some more. (Here's Ethan's version of playing.)
Our grapes are ripe and we have tons. (Here's Kate crushing grapes by hand to make grape jelly.)
Our apples are ripe earlier than they have been in previous years, but they are still great quality. My second planting of beets also needed to be pulled and dealt with. And we are finishing up what we can do with our tomatoes. The plants are dead and we didn't get quite what we wanted, so Ethan and I took a trip to a local pick-your-own farm to buy about 30 lbs. to round out our harvest.
And then, later in the week Ethan and I picked pears. Who knew our little tree would give us FOUR buckets this year?! I'm seeing pearsauce and pear juice in our future ...
The week that school started (our kids went back on Sept. 1) was filled with back-to-school kinds of stuff. Monday morning we had a meeting with Anna's team at her school. Anna participated in this meeting for the first time (while Kate and Ethan sat in the office entertaining each other and the office staff with our bag of activities). Then we headed across town for an hour long appointment to get Anna's orthotics (ankel braces) adjusted. The kids and I actually did really well with this one, especially in comparison to others earlier in the summer. Pandora music, a few games, a relaxed atmosphere, and we're good to go.
Tuesday was another marathon canning day. Just in case anyone doubted our need for a six-burner stove, here's the proof. Plus, I was roasting some beets and sweet potatoes in the oven at the same time.
Kate's claim to fame that Tuesday was that she didn't change out of her pajamas until after dinner, when we had to go in to her school to drop off her school supplies and meet her teacher.
Wednesday, in between Ethan's first Little Gym class and school pictures, we brought Matt a surprise lunch from Culver's. A fun way to end our round of summer activities.
And just like that, summer is over. One of these days, I'll write down my thoughts on that. Until then, though, I'm going to get some rest.
We turned it into a special end for this summer season :) On Tuesday, August 23, GE had a family picnic in the afternoon. Matt and his maker's team had worked hard to set up a handful of projects for kids/families to do so we were all looking forward to spending the afternoon with him.
We had lunch, then when we left Matt and Anna to make a kite together, the other two kids and I checked out the bounce house and a zoomobile, before heading back to the lawn games.
While Anna was finishing her kite, Kate, Ethan, and I took turns flying our kite from home. Kate helped Anna get hers in the air, too!
Matt decided to bring along the go-kart for Anna to drive around. Constantly going over rough ground isn't a lot of fun in a wheelchair or a walker. But a go-kart? Sure!
The kids had fun and Matt really enjoyed showing us around and having a day off of work that wasn't really a day off :)
Then on Wednesday the kids and I did a day trip down to the Rockford Discovery Center. We dubbed this one "a hit" and will plan to return on another rainy day. The museum was compact and engaging enough that I could keep an eye on everyone at the same time, even if they were interested in different exhibits. We didn't even have enough time to explore everywhere!
Ethan loved the tots area!
Anna and I could have spent hours making different pictures with this simple rubber band set-up.
Kate described this ball maze in detail to Matt over dinner. She and Ethan thoroughly enjoyed finding different ways to send the balls up and down.
Who doesn't love a good farm exhibit?
The rain cleared out enough in the afternoon for the outdoor space to open up. You could spend an entire day just exploring out there!
Just before we left, we discovered the full body push-pin wall. Actually, I don't know what it's called, but our small hand-held version has held the attention of each of our kids for endless periods of time, so you can imagine how much fun a large scale one would be.
Of course we all did face prints. The best part is that we can tell which kid is which just by their prints.
Ethan ... the chubby cheeks still give him away.
Anna ... I spy some glasses and knee prints.
And Kate ... we can recognize that smile anywhere :)
Even the drive down and back was filled with loud laughter and silly antics in the van. The day will go down in my memory banks as one of the better ones of the summer :)
On Friday of that week, Matt joined us for a field trip to the Milwaukee County Zoo. I have been wanting to take the kids there since Ethan was a baby, but it never worked until this year. A fun trip, for sure, but I'm glad Matt was along. This one would have been a bit trickier if I had done it alone.
Here's a few of the animals we were able to see.
We took in a couple of shows as well. The Birds of Prey show provided a much needed sitting break for some of us.
As we have learned, handicap seating can have its benefits, as well as its drawbacks. In this show, not only were the seats right up front, but they were also in the direct flight line from one trainer to another. Many of the birds flew just a few feet over our heads as they were in transit to their next post. It was a little nerve-wracking for some of us :)
Our other show was called Oceans of Life, featuring seals and sea lions. I think Kate enjoyed herself the most for this show, not only because she could see the marine animals up close, but also because she was able to see a number of trainers working with the animals.
We ended our day with a train ride.
Everyone was about at the end of their energy by this point.
Our ride home that day was much quieter than the ride home on Wednesday :)
The days we weren't out and about doing activities, we were holed up at home. The kids played, played, and played some more while I canned, canned, and canned some more. (Here's Ethan's version of playing.)
Our grapes are ripe and we have tons. (Here's Kate crushing grapes by hand to make grape jelly.)
Our apples are ripe earlier than they have been in previous years, but they are still great quality. My second planting of beets also needed to be pulled and dealt with. And we are finishing up what we can do with our tomatoes. The plants are dead and we didn't get quite what we wanted, so Ethan and I took a trip to a local pick-your-own farm to buy about 30 lbs. to round out our harvest.
And then, later in the week Ethan and I picked pears. Who knew our little tree would give us FOUR buckets this year?! I'm seeing pearsauce and pear juice in our future ...
The week that school started (our kids went back on Sept. 1) was filled with back-to-school kinds of stuff. Monday morning we had a meeting with Anna's team at her school. Anna participated in this meeting for the first time (while Kate and Ethan sat in the office entertaining each other and the office staff with our bag of activities). Then we headed across town for an hour long appointment to get Anna's orthotics (ankel braces) adjusted. The kids and I actually did really well with this one, especially in comparison to others earlier in the summer. Pandora music, a few games, a relaxed atmosphere, and we're good to go.
Tuesday was another marathon canning day. Just in case anyone doubted our need for a six-burner stove, here's the proof. Plus, I was roasting some beets and sweet potatoes in the oven at the same time.
Kate's claim to fame that Tuesday was that she didn't change out of her pajamas until after dinner, when we had to go in to her school to drop off her school supplies and meet her teacher.
Wednesday, in between Ethan's first Little Gym class and school pictures, we brought Matt a surprise lunch from Culver's. A fun way to end our round of summer activities.
And just like that, summer is over. One of these days, I'll write down my thoughts on that. Until then, though, I'm going to get some rest.
Friday, August 26, 2016
Trip up North
Ever since the girls were little, I would take them up to my parents' place for a few days (usually in August) just to get away. Matt would be able to have some time at home alone to do whatever he pleased, the kids would have a chance to make memories with their grandparents, and I would get a break from food prep/clean-up and all of the other responsibilities that come with being at home all the time.
Two summers ago the trip didn't happen and I tried it again last summer with pretty poor results. Kate and Ethan had fun, but Anna and I had a rough time. Too bad we didn't know as much then about how to make trips successful for Anna. Now we do.
The kids and I left on Wednesday morning and came home on Saturday around lunch time. We had a great time, made lots of fun memories, and I was able to experience a relatively stress-free few days. Hooray! Although Matt didn't get to do some of the things he had originally been hoping to accomplish (stupid uncooperative weather), he had a kind of freedom that he hasn't had in a long time.
Here's a few of the more memorable moments.
Ethan has been initiated into the "watering plants with Grandma" club.
Kate collected a bucket full of treasures during our post-blackberry-picking-walk in the woods.
Ethan used Grandpa's body as an exciting road for his trucks.
Games, games, and more games were played during the three day visit.
Of course we went blueberry picking. Kate gathered quite a few berries; Anna found huge stashes down by the ground; Ethan wandered. My dad and I even went back a second day to get a few more buckets full of berries!
The kids wanted to visit the beach again this year. They had so much fun!
Running and splashing ...
Swimming with Grandma ...
Collecting more treasures ...
And riding the zip-line in the new neighboring park.
Grandma and Grandpa had set up a water balloon fight for us when we got home.
It was a fun end to the afternoon. (Kate's on her tip-toes here. She isn't really that much taller than Anna yet, although she is about half an inch higher than her big sister these days.)
Another afternoon, Anna had a playdate with the friend she made at CI Summer Camp. We learned that Melanie and her family live only a few miles away from Grandpa and Grandma! Meanwhile, Grandma took the younger two kids to the local indoor pool. They had a good time, too :)
Our last night included a campfire and some yummy s'mores.
Messy, but good.
We have decided that when someone asks Anna what her favorite food is now, she should say "s'mores!" Without fail these days, she will eat her s'mores, even when she hasn't wanted anything else to eat.
Most days, Kate could be found reading Grandma's books. Poor Kate can't walk past a book at Grandma's house without picking it up to read.
Ethan helped Grandpa with his sudoku games. It turns out Ethan can identify his numbers pretty well. Who knew?
Anna was proud to be able to write in Grandma's guest room journal for the first time on her own.
In all, it was a good trip. We are glad it worked out so much better than last year's visit :)
Two summers ago the trip didn't happen and I tried it again last summer with pretty poor results. Kate and Ethan had fun, but Anna and I had a rough time. Too bad we didn't know as much then about how to make trips successful for Anna. Now we do.
The kids and I left on Wednesday morning and came home on Saturday around lunch time. We had a great time, made lots of fun memories, and I was able to experience a relatively stress-free few days. Hooray! Although Matt didn't get to do some of the things he had originally been hoping to accomplish (stupid uncooperative weather), he had a kind of freedom that he hasn't had in a long time.
Here's a few of the more memorable moments.
Ethan has been initiated into the "watering plants with Grandma" club.
Kate collected a bucket full of treasures during our post-blackberry-picking-walk in the woods.
Ethan used Grandpa's body as an exciting road for his trucks.
Games, games, and more games were played during the three day visit.
Of course we went blueberry picking. Kate gathered quite a few berries; Anna found huge stashes down by the ground; Ethan wandered. My dad and I even went back a second day to get a few more buckets full of berries!
The kids wanted to visit the beach again this year. They had so much fun!
Running and splashing ...
Swimming with Grandma ...
Collecting more treasures ...
And riding the zip-line in the new neighboring park.
Grandma and Grandpa had set up a water balloon fight for us when we got home.
It was a fun end to the afternoon. (Kate's on her tip-toes here. She isn't really that much taller than Anna yet, although she is about half an inch higher than her big sister these days.)
Another afternoon, Anna had a playdate with the friend she made at CI Summer Camp. We learned that Melanie and her family live only a few miles away from Grandpa and Grandma! Meanwhile, Grandma took the younger two kids to the local indoor pool. They had a good time, too :)
Our last night included a campfire and some yummy s'mores.
Messy, but good.
We have decided that when someone asks Anna what her favorite food is now, she should say "s'mores!" Without fail these days, she will eat her s'mores, even when she hasn't wanted anything else to eat.
Most days, Kate could be found reading Grandma's books. Poor Kate can't walk past a book at Grandma's house without picking it up to read.
Ethan helped Grandpa with his sudoku games. It turns out Ethan can identify his numbers pretty well. Who knew?
Anna was proud to be able to write in Grandma's guest room journal for the first time on her own.
In all, it was a good trip. We are glad it worked out so much better than last year's visit :)
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