My brother, Adam, is getting married this fall to a wonderful woman whom we are looking forward to embracing as family. Hooray!
The wedding is in Colorado, near where they live. Great! We love visiting the mountains.
But wait ... how do we get there?
Mapquest says the driving time is about 17.5 hours. Hmmm ... That seems like a long time in the car.
What if we fly? The flight is only about 2.5 hours. Definitely doable.
But flights from the Madison airport are EXPENSIVE.
What about flying from Milwaukee? The tickets are about half the price. Driving an hour or so to the airport to save a bunch of money is worth it.
However, if we fly to Denver, we would still need to rent a van to drive the rest of the way with our family, plus a wheelchair.
No big deal. If we add up the time it takes to drive to Milwaukee, fly to Denver, then drive the rest of the way, we are still ahead than if we were to drive the whole way.
But wait. We have a child with multiple physical challenges. How does that make flying look different for our family?
1. First the wheelchair ... At what point would we need to relinquish the wheelchair? Where will the wheelchair get stored on the plane? It is very important that Anna's chair is safely returned to us at the end of the flight.
2. Next seating ... What kind of seating options would our family have? Two typical kids, one with special needs, two adults. Hmm. That's tricky.
3. Now carseats ... What about Anna's carseat? She needs a special carseat to be safe and feel comfortable, in cars and in aircraft. Does the carseat fit on the airplane? How do we carry it (along with everything else) through an airport?
4. Tube-feeding ... What about the TSA guidelines regarding food and liquids? We would need Anna's formula, pureed foods, and medicines in our carry-on bag. What kinds of doctor's notes would we need?
5. Security ... What about security? People in wheelchairs automatically get sent to a different line so their
wheelchairs can be inspected carefully. How much longer would that take? What do we do with the other kids during that time?
6. Luggage ... Whenever we travel we have lots of extra "stuff" we need to pack, medical and otherwise. How many bags would we need to check? How much does this cost? What about carry-on bags?
That doesn't even take into consideration the fact that we have three kids who have no memory of flying before. That can be tricky in and of itself.
And one of those kids has difficulty in new sensory environments and becomes fatigued easily.
And what if the flight were delayed? Perhaps even for multiple hours.
And what if Anna threw up? On the plane or just in the airport or rental van.
And what if someone, anyone, was unkind or insensitive to our family's needs and created additional stumbling blocks?
Come to think of it, 17.5 hours of driving doesn't sound too bad after all. Many of the unknowns in the journey become knowns.
Plus, if this trip works, then maybe another one in the future to visit other family sounds more feasible, too.
Note: As I have said before, we do not want, or expect, pity from others. However, I share this experience to illustrate some of the challenges that are presented in our life. Other families have other challenges. Imagine the challenges of traveling for a family with a child on the autism spectrum, or one with cognitive disabilities, or even traveling with a person who has food sensitivities.
If you learn one thing from the stories that we share, I ask that it be an awareness that every person has a complex story to share, complete with their own strengths and weaknesses, their own journey of ups and downs. Be aware of the depth of those around you. As such, be kind, caring, and slow to judge. Teach your children to do the same.
Monday, August 3, 2015
Thursday, July 30, 2015
A Little More Fun
We have been having a little more fun since last week finally wrapped up.
Sunday afternoon we packed the family up and spent the afternoon at Little Amerrika in Marshall, WI. The BCCN was hosting its summer picnic there, having been rescheduled from the previous weekend due to the extremely hot (well, at least hot for WI folks) weather. This past Sunday was a much nicer day in terms of the weather for an afternoon at a small amusement park.
After lunch in the shelter, Anna got her face painted while Kate and Ethan tried out some of the kiddie rides. Firetrucks, mini-ferris wheel, airplanes, and boats were all perfect for those two.
As a family we did an elevated touring car ride around the park. Then Kate and Ethan wanted to go down the big, bouncy slide, even though the line was LONG.
We ended the afternoon with a trip on the Whiskey River Railroad.
When we left home, we figured we would have lunch and stick around for maybe an hour or so. Kate and Ethan were having so much fun, though, that we pushed through for more than three hours. Slowly, we are figuring out ways to help Anna adjust and deal with the sensory overload during activities like this so that we are able to stay when the other kids are having fun.
Monday was awesome. The only scheduled activity was the girls' acting class.
Tuesday was productive. Leah came to watch Kate and Ethan in the morning while Anna had therapy. In the afternoon we made a big batch of potpies as well as burritos to add to our stash of frozen foods that I can pull out on busy days.
Wednesday was a free day ... absolutely no scheduled activities! After a short visit at a friend's house, we picked up Anna's new glasses and then proceeded to the airport for our "airport field trip." The kids have been wanting to go all summer. We had lunch at O'Malley's Jet Room, a restaurant with a great view of small aircraft landing and taking off. Then we visited the main terminal and learned about the different parts within an airport. We acknowledge that it will be a long time until we fly with our kids so it's good for them to learn about airports and have that information tucked into their brains at this point.
We have continued to have perfect pool weather. So far no one is bored with our afternoons out there. We tend to bring different toys each day; variety is good.
I'm looking forward to having a few more weeks like this. We have already begun conversations about how this coming school year will look for Anna and have a bit more work to do in preparation for the start of the year. However, I am hoping to soak up the time with my kids home during the month of August. I'm not ready for them go back just yet :)
Sunday afternoon we packed the family up and spent the afternoon at Little Amerrika in Marshall, WI. The BCCN was hosting its summer picnic there, having been rescheduled from the previous weekend due to the extremely hot (well, at least hot for WI folks) weather. This past Sunday was a much nicer day in terms of the weather for an afternoon at a small amusement park.
After lunch in the shelter, Anna got her face painted while Kate and Ethan tried out some of the kiddie rides. Firetrucks, mini-ferris wheel, airplanes, and boats were all perfect for those two.
As a family we did an elevated touring car ride around the park. Then Kate and Ethan wanted to go down the big, bouncy slide, even though the line was LONG.
We ended the afternoon with a trip on the Whiskey River Railroad.
When we left home, we figured we would have lunch and stick around for maybe an hour or so. Kate and Ethan were having so much fun, though, that we pushed through for more than three hours. Slowly, we are figuring out ways to help Anna adjust and deal with the sensory overload during activities like this so that we are able to stay when the other kids are having fun.
Monday was awesome. The only scheduled activity was the girls' acting class.
Tuesday was productive. Leah came to watch Kate and Ethan in the morning while Anna had therapy. In the afternoon we made a big batch of potpies as well as burritos to add to our stash of frozen foods that I can pull out on busy days.
Wednesday was a free day ... absolutely no scheduled activities! After a short visit at a friend's house, we picked up Anna's new glasses and then proceeded to the airport for our "airport field trip." The kids have been wanting to go all summer. We had lunch at O'Malley's Jet Room, a restaurant with a great view of small aircraft landing and taking off. Then we visited the main terminal and learned about the different parts within an airport. We acknowledge that it will be a long time until we fly with our kids so it's good for them to learn about airports and have that information tucked into their brains at this point.
We have continued to have perfect pool weather. So far no one is bored with our afternoons out there. We tend to bring different toys each day; variety is good.
I'm looking forward to having a few more weeks like this. We have already begun conversations about how this coming school year will look for Anna and have a bit more work to do in preparation for the start of the year. However, I am hoping to soak up the time with my kids home during the month of August. I'm not ready for them go back just yet :)
Thursday, July 23, 2015
Updates
I'm ready to have my summer back. One of the parts of summer that I love is not having to abide by other people's schedules. Typically, we sign our kids up for minimal activities, preferring to set our own schedule and routines. I love the flexibility that comes with living this way.
Last summer was different. In general, there was way too much going on.
This summer has been better. Fewer appointments, fewer schedules, more freedom.
The last few weeks have probably been our most "scheduled" and I'm ready for it to be done. Anna and Kate both took a summer school class through the school district for the last two weeks; Kate participated in Adventures in Nature whereas Anna was part of a Fun with Books class.
Our school district does an amazing job of offering plenty of fun, yet educational, courses for kids during the summer. The only problem comes with the sign up. Hundreds of parents wait by their computer at 7 p.m. one night in April, hoping that they can click fast enough to get the courses they want before they fill up. I know of more than one family who has abandonned the summer school option simply because they don't want to deal with the sign up. But I digress ...
Both classes were good and served their purposes, but having to get everyone fed, bathroomed, and to school by 11:25 a.m. every Monday-Thursday was more than I wanted to do. We were late most days.
Anna still had her therapy appointments twice a week; we had to adjusting the timing due to the summer school schedule. Throw into the equation dentist appointments for everyone in the family, an eye check-up for me, the recording of the commercial for the BCCN, a couple of yearly physicals, picking out Anna's new glasses, and sign-up for fall programs at the therapy clinic, and we had a full plate of "stuff" most days. I spent way too much time in the car this week; I'm not really looking forward to any years of chauffeuring my kids around town.
On top of all that, we've had a summer cold going through the house. Kate started hers on Thursday; Ethan went down on Friday; Anna's began on Saturday; and mine hit Sunday. So far Matt has stayed healthy. It hasn't been too bad, as far as summer colds go, but I'm tired of the extra work that comes with anyone, let alone almost everyone, feeling under the weather.
Thankfully, we have been able to take advantage of our backyard pool on most days, even with the busier mornings. At least once a week, I say THANK YOU to Matt for agreeing to and maintaining this pool. All three of our kids are continuing to make progress in their water skills. More importantly, though, they have all sorts of fun goofing off, exploring, playing around, and being together.
One bright spot last week was on Friday when the kids and I visited the Dane County Fair. The best part, for me, was being on our own schedule. We could do what we wanted, when we wanted, and leave when we were ready. The kids enjoyed the animals, the crafts, and the people. We didn't try any rides. Not only was it too hot for us, but it isn't really feasible for me to take all three kids on any rides, nor could I take just one or two of them on a ride and leave the third alone. And none of them would really have wanted to ride anything by themselves. But all three kids were fine with what we did, we made some good memories, and I don't think any of them thought they missed out on something.
Friday this week is the last day of scheduled activities for this stretch. Once Monday arrives, we will have two solid weeks with nothing but Anna's therapy, followed by two more weeks of very, very minimal "extras". Woohoo!
Time for Prayers
Thanksgiving
Please give thanks for all of the relatively, low-key, normal check-ups we have had for everyone in our family recently.
Please thank God for the more relaxed pace of summer that our family usually has.
Please give thanks that this cold has been relatively mild and short-lived.
Please thank God for our girls' summer school teachers and helpers; both teachers were a great fit for our kids.
Please give thanks for the abundant produce in our garden. So far it is coming in at just the right times in just the right amounts, and it's delicious.
Requests
Please ask God to grant us the opportunity to make meaningful memories with each other yet this summer.
Please pray that the lingering aspects of our colds go away quickly.
Please contniue to pray that Anna's treatments were 100% effective.
Please continue to pray for Anna's continued improvements in all of her rehabilitation skills.
Please continue to ask God to grant us wisdom, peace, patience, rest, and joy, especially as we begin preparing for the coming school year.
Please continue to pray for those working with Anna and our family, for their wisdom and insight especially.
Thanks, as always!
One little story, for me to remember more than anything. The last few nights, the kids have been playing with the rocks around our patio ... sorting them, collecting them, finding pretty ones, etc. Tonight Kate had a big collection in a bucket. Ethan looked at it, then got really excited and said, "Kate! Kate! We should put those rocks in the BIG dump truck because they are heavy and it can haul it!" This boy's language skills have impressed every one of Anna's speech/language therapists to date.
Last summer was different. In general, there was way too much going on.
This summer has been better. Fewer appointments, fewer schedules, more freedom.
The last few weeks have probably been our most "scheduled" and I'm ready for it to be done. Anna and Kate both took a summer school class through the school district for the last two weeks; Kate participated in Adventures in Nature whereas Anna was part of a Fun with Books class.
Our school district does an amazing job of offering plenty of fun, yet educational, courses for kids during the summer. The only problem comes with the sign up. Hundreds of parents wait by their computer at 7 p.m. one night in April, hoping that they can click fast enough to get the courses they want before they fill up. I know of more than one family who has abandonned the summer school option simply because they don't want to deal with the sign up. But I digress ...
Both classes were good and served their purposes, but having to get everyone fed, bathroomed, and to school by 11:25 a.m. every Monday-Thursday was more than I wanted to do. We were late most days.
Anna still had her therapy appointments twice a week; we had to adjusting the timing due to the summer school schedule. Throw into the equation dentist appointments for everyone in the family, an eye check-up for me, the recording of the commercial for the BCCN, a couple of yearly physicals, picking out Anna's new glasses, and sign-up for fall programs at the therapy clinic, and we had a full plate of "stuff" most days. I spent way too much time in the car this week; I'm not really looking forward to any years of chauffeuring my kids around town.
On top of all that, we've had a summer cold going through the house. Kate started hers on Thursday; Ethan went down on Friday; Anna's began on Saturday; and mine hit Sunday. So far Matt has stayed healthy. It hasn't been too bad, as far as summer colds go, but I'm tired of the extra work that comes with anyone, let alone almost everyone, feeling under the weather.
Thankfully, we have been able to take advantage of our backyard pool on most days, even with the busier mornings. At least once a week, I say THANK YOU to Matt for agreeing to and maintaining this pool. All three of our kids are continuing to make progress in their water skills. More importantly, though, they have all sorts of fun goofing off, exploring, playing around, and being together.
One bright spot last week was on Friday when the kids and I visited the Dane County Fair. The best part, for me, was being on our own schedule. We could do what we wanted, when we wanted, and leave when we were ready. The kids enjoyed the animals, the crafts, and the people. We didn't try any rides. Not only was it too hot for us, but it isn't really feasible for me to take all three kids on any rides, nor could I take just one or two of them on a ride and leave the third alone. And none of them would really have wanted to ride anything by themselves. But all three kids were fine with what we did, we made some good memories, and I don't think any of them thought they missed out on something.
Friday this week is the last day of scheduled activities for this stretch. Once Monday arrives, we will have two solid weeks with nothing but Anna's therapy, followed by two more weeks of very, very minimal "extras". Woohoo!
Time for Prayers
Thanksgiving
Please give thanks for all of the relatively, low-key, normal check-ups we have had for everyone in our family recently.
Please thank God for the more relaxed pace of summer that our family usually has.
Please give thanks that this cold has been relatively mild and short-lived.
Please thank God for our girls' summer school teachers and helpers; both teachers were a great fit for our kids.
Please give thanks for the abundant produce in our garden. So far it is coming in at just the right times in just the right amounts, and it's delicious.
Requests
Please ask God to grant us the opportunity to make meaningful memories with each other yet this summer.
Please pray that the lingering aspects of our colds go away quickly.
Please contniue to pray that Anna's treatments were 100% effective.
Please continue to pray for Anna's continued improvements in all of her rehabilitation skills.
Please continue to ask God to grant us wisdom, peace, patience, rest, and joy, especially as we begin preparing for the coming school year.
Please continue to pray for those working with Anna and our family, for their wisdom and insight especially.
Thanks, as always!
One little story, for me to remember more than anything. The last few nights, the kids have been playing with the rocks around our patio ... sorting them, collecting them, finding pretty ones, etc. Tonight Kate had a big collection in a bucket. Ethan looked at it, then got really excited and said, "Kate! Kate! We should put those rocks in the BIG dump truck because they are heavy and it can haul it!" This boy's language skills have impressed every one of Anna's speech/language therapists to date.
Tuesday, July 21, 2015
Superhero Anna
This year, Anna is one of the honorary starters for the Superhero Run sponsored by the Badger Childhood Cancer Network (BCCN). On their website (https://www.badgersuperhero.com/), she is listed as Superhero Anna.
We were told of the BCCN last year in February when Anna was first diagnosed, but for most of the calendar year we were simply trying to survive so we didn't give any thought to the different resources and offerings. We didn't have much time and energy to put into relationships with family and friends, so we didn't have much desire to build any new relationships, either. I think Anna might have even been hospitalized at the time of last year's Superhero Run.
Many families create a team for the event, especially if their child is an honorary superhero. This year we are choosing not to. Perhaps it is selfish, but I just don't want to take on another responsibility right now. Maybe someday. However, please feel free to donate to the cause on their website, whether or not Anna has an actual "team".
Back in May, we were contacted by the BCCN and asked if Anna would like to be recognized this year, since she had a particularly rough time with her cancer and its treatments. When this kind of publicity event occurs, Matt and I discuss the situation before bringing it up with Anna. In her mind, any opportunity to help sick kids is a good thing; she will jump at these chances without giving much thought as to what it may mean for her personally. She could care less about being on TV or having her picture taken; she cares more about having a good time in the moment and making sure an organization like the BCCN can earn more money to help more kids.
The BCCN's motto is "Because kids can't fight cancer alone." Their mission is "to educate, support, serve, and advocate for children with cancer, their families, survivors of childhood cancer and the professionals who care for them". We stand firmly in line with these statements. Anna and the rest us certainly aren't fighting this cancer fight alone. Unfortunately, however, some families do not have the same kind of support networks in place that we had and still have. For many of these families, the BCCN is there to help in times of need. We hope that Anna's story helps the BCCN have a successful Superhero Run for 2015.
The four kids chosen this year all turn 8 within a few months of one another. The two boys are twins; one fought leukemia when he was younger whereas his brother was diagnosed last summer. The other girl struggles with sickle cell anemia.
We met everyone in June during a photoshoot at the zoo. Anna had a good time and Matt did a great job of joking around with her to get some genuine smiles for the photographer's pictures.
Last Monday we headed over to the television studio (after Anna and Matt's dentist appointments in the morning, and Anna's first summer school class mid-day) for the taping of a commercial which will air periodically on NBC15.
Prior to cancer, Anna would not have been the type of kid to shine during an experience like this; just ask her kindergarten teacher if she ever got a good photograph of Anna smiling. Now you take that Anna and throw cancer and all of those nasty treatments into the mix, and she is going to do the opposite of shine. Unfortunately, she was a bit like a deer caught in the headlights, which I'm sure is how she must have felt.
On a positive side, Anna said her line loudly, clearly, and with gusto.
From our perspective, Anna did a pretty darn good job for someone who had the maximum dosage of whole brain radiation allowed for someone her age. That kind of radiation makes new sensory experiences (like all of those lights and cameras pointing right at you) extra difficult to take in.
I was reminded during this brief encounter with others that I never, ever want to make judgements about someone else ... because it makes me so sad when others pass judgement on Anna, especially when they do not know what she has gone through, and especially when she is placed in a challenging situation. Sometimes I wish there were an easier way for the "real" Anna to come through for others to see.
In addition to this publicity for the BCCN, Anna's wish experience is going to be shared in an upcoming Make-A-Wish newsletter. Originally, we requested no publicity, to honor the privacy of our family members. However, after the directors and coordinators at Make-A-Wish read through our summary here on this blog, they asked us specifically if they could share some aspects of Anna's wish. We acquiesced, as long as names and photos of our extended family were not included.
Again, in Anna's mind, any opportunity to help sick kids is a good one.
We were told of the BCCN last year in February when Anna was first diagnosed, but for most of the calendar year we were simply trying to survive so we didn't give any thought to the different resources and offerings. We didn't have much time and energy to put into relationships with family and friends, so we didn't have much desire to build any new relationships, either. I think Anna might have even been hospitalized at the time of last year's Superhero Run.
Many families create a team for the event, especially if their child is an honorary superhero. This year we are choosing not to. Perhaps it is selfish, but I just don't want to take on another responsibility right now. Maybe someday. However, please feel free to donate to the cause on their website, whether or not Anna has an actual "team".
Back in May, we were contacted by the BCCN and asked if Anna would like to be recognized this year, since she had a particularly rough time with her cancer and its treatments. When this kind of publicity event occurs, Matt and I discuss the situation before bringing it up with Anna. In her mind, any opportunity to help sick kids is a good thing; she will jump at these chances without giving much thought as to what it may mean for her personally. She could care less about being on TV or having her picture taken; she cares more about having a good time in the moment and making sure an organization like the BCCN can earn more money to help more kids.
The BCCN's motto is "Because kids can't fight cancer alone." Their mission is "to educate, support, serve, and advocate for children with cancer, their families, survivors of childhood cancer and the professionals who care for them". We stand firmly in line with these statements. Anna and the rest us certainly aren't fighting this cancer fight alone. Unfortunately, however, some families do not have the same kind of support networks in place that we had and still have. For many of these families, the BCCN is there to help in times of need. We hope that Anna's story helps the BCCN have a successful Superhero Run for 2015.
The four kids chosen this year all turn 8 within a few months of one another. The two boys are twins; one fought leukemia when he was younger whereas his brother was diagnosed last summer. The other girl struggles with sickle cell anemia.
We met everyone in June during a photoshoot at the zoo. Anna had a good time and Matt did a great job of joking around with her to get some genuine smiles for the photographer's pictures.
Last Monday we headed over to the television studio (after Anna and Matt's dentist appointments in the morning, and Anna's first summer school class mid-day) for the taping of a commercial which will air periodically on NBC15.
Prior to cancer, Anna would not have been the type of kid to shine during an experience like this; just ask her kindergarten teacher if she ever got a good photograph of Anna smiling. Now you take that Anna and throw cancer and all of those nasty treatments into the mix, and she is going to do the opposite of shine. Unfortunately, she was a bit like a deer caught in the headlights, which I'm sure is how she must have felt.
On a positive side, Anna said her line loudly, clearly, and with gusto.
From our perspective, Anna did a pretty darn good job for someone who had the maximum dosage of whole brain radiation allowed for someone her age. That kind of radiation makes new sensory experiences (like all of those lights and cameras pointing right at you) extra difficult to take in.
I was reminded during this brief encounter with others that I never, ever want to make judgements about someone else ... because it makes me so sad when others pass judgement on Anna, especially when they do not know what she has gone through, and especially when she is placed in a challenging situation. Sometimes I wish there were an easier way for the "real" Anna to come through for others to see.
In addition to this publicity for the BCCN, Anna's wish experience is going to be shared in an upcoming Make-A-Wish newsletter. Originally, we requested no publicity, to honor the privacy of our family members. However, after the directors and coordinators at Make-A-Wish read through our summary here on this blog, they asked us specifically if they could share some aspects of Anna's wish. We acquiesced, as long as names and photos of our extended family were not included.
Again, in Anna's mind, any opportunity to help sick kids is a good one.
Saturday, July 18, 2015
The storm and the corn
Let me preface this post by saying that my garden is a hobby, not a livelihood. Unlike some people in different parts of the country and world, we do not need our garden produce to survive. We can always go to a grocery store or farmer's market and find plenty of delicious, fresh, nutritious food.
With that said, my garden is my hobby. Every year, I am privileged to participate in the growing process of a variety of plants. I lovingly prepare the soil in the spring, anxiously await the first green shoots, and then wait patiently for the plants to mature.
An experienced gardener learns when it is best to intervene and when it is more helpful to sit back and let a plant fight through a struggle on its own; sometimes the intervention can cause more damage than good. With my garden, I work to provide support as necessary; I can be found picking off beetles, bugs, and worms whenever the need arises and I have the opportunity; and I rejoice the ripe fruits and vegetables when they arrive.
In my last post, I said that our corn was doing great. It was, until Sunday night. When the weather radio went off at 3:30 a.m., my first thoughts traveled to the young boy from our church who was supposed to be camping with his boy scout troop. Everyone on the trip is safe, but they were a bit wet and tired when they got home. When I heard the wind gusts start around 4:15 a.m., however, my thoughts went to my corn plants. Without having to wait until morning to see, I knew they had blown over.
For those who don't have the same experience with plants as I do, here is a brief tutorial on corn. Corn is one of a few plants that do not require insects for the fertilization process. With corn, the pollen falls from the tassels onto the silks which are at the top of the ears of corn. The necessary parts then travel down the silks to where each and every kernel is formed on an ear. Because the plant requires gravity or wind for fertilization, the upright stature of corn plants is very important. If the pollen can't fall onto the silks, no ears of corn will develop.
When I saw my corn lying flat on the ground in the morning, I grieved, not as long or as deeply as I have grieved in the past, but I certainly was upset about the loss of our hoped for corn crop. After last year's fiasco with planting half of our corn rows with a variety that tasted like field corn, I was really looking forward to the joys of fresh sweet corn.
But, weather happens. And in this case, the damage to the corn also affected some of the plants around it. A few rows were lying on top of my freshly planted fall broccoli plants, while a few other rows were toppled over on top of my potato plants.
When we got up in the morning and realized the extent of the damage (all of the corn plants were literally lying flat on the ground, while nothing else in the garden or yard seemed to be touched), I tried my best to "walk the plants back up." Unfortunately, though, some of the anchoring roots seemed to be damaged beyond repair.
Still, I kept trying with row after row. I have learned over the course of the last few years that if there is any hope, I will keep going. I couldn't give up on the corn because maybe, just maybe, I would be able to give it the support it needed in order to thrive. Maybe I could provide it with just the right amount of help at just the right time. Maybe the roots were deep enough and strong enough to weather this particular storm.
Over the course of the day, it seemed to be more and more apparent that most of the corn was probably a lost cause. The slightest breeze would knock the plants to one side or the other. We toyed with the idea of working harder to salvage the plants by staking and tying up every single one, but that would take a lot of time and supplies. And, seriously, they are corn plants. If the worst were to happen and the crop was a complete lost, we could just buy a few bushels of fresh sweet corn from someone nearby and freeze it.
So I did what I could, but life is busy and I only had a limited amount of time to work that morning. The week was another full one so I didn't have much of a chance to look closely at the corn except for maybe once a day. Life's busy distractions sometimes force me to be patient with certain matters.
But each time I saw the corn over the course of the week, it looked like it was recovering more and more, reaching for the sky. As of Saturday, most of the corn had, miraculously, stood upright once again ... just in time for the tassels to appear. The internal drive for living things to not only survive, but thrive, never ceases to amaze me.
Our corn crop will probably not be quite what it would have been had we not had this particular storm. Another storm may still come and not it all down again, at an even more inopportune time. But for now, the corn is doing fairly well again, even if the stalks are a bit crooked at the base.
The connection to and illustration of Anna's life was not lost on me this past week.
With that said, my garden is my hobby. Every year, I am privileged to participate in the growing process of a variety of plants. I lovingly prepare the soil in the spring, anxiously await the first green shoots, and then wait patiently for the plants to mature.
An experienced gardener learns when it is best to intervene and when it is more helpful to sit back and let a plant fight through a struggle on its own; sometimes the intervention can cause more damage than good. With my garden, I work to provide support as necessary; I can be found picking off beetles, bugs, and worms whenever the need arises and I have the opportunity; and I rejoice the ripe fruits and vegetables when they arrive.
In my last post, I said that our corn was doing great. It was, until Sunday night. When the weather radio went off at 3:30 a.m., my first thoughts traveled to the young boy from our church who was supposed to be camping with his boy scout troop. Everyone on the trip is safe, but they were a bit wet and tired when they got home. When I heard the wind gusts start around 4:15 a.m., however, my thoughts went to my corn plants. Without having to wait until morning to see, I knew they had blown over.
For those who don't have the same experience with plants as I do, here is a brief tutorial on corn. Corn is one of a few plants that do not require insects for the fertilization process. With corn, the pollen falls from the tassels onto the silks which are at the top of the ears of corn. The necessary parts then travel down the silks to where each and every kernel is formed on an ear. Because the plant requires gravity or wind for fertilization, the upright stature of corn plants is very important. If the pollen can't fall onto the silks, no ears of corn will develop.
When I saw my corn lying flat on the ground in the morning, I grieved, not as long or as deeply as I have grieved in the past, but I certainly was upset about the loss of our hoped for corn crop. After last year's fiasco with planting half of our corn rows with a variety that tasted like field corn, I was really looking forward to the joys of fresh sweet corn.
But, weather happens. And in this case, the damage to the corn also affected some of the plants around it. A few rows were lying on top of my freshly planted fall broccoli plants, while a few other rows were toppled over on top of my potato plants.
When we got up in the morning and realized the extent of the damage (all of the corn plants were literally lying flat on the ground, while nothing else in the garden or yard seemed to be touched), I tried my best to "walk the plants back up." Unfortunately, though, some of the anchoring roots seemed to be damaged beyond repair.
Still, I kept trying with row after row. I have learned over the course of the last few years that if there is any hope, I will keep going. I couldn't give up on the corn because maybe, just maybe, I would be able to give it the support it needed in order to thrive. Maybe I could provide it with just the right amount of help at just the right time. Maybe the roots were deep enough and strong enough to weather this particular storm.
Over the course of the day, it seemed to be more and more apparent that most of the corn was probably a lost cause. The slightest breeze would knock the plants to one side or the other. We toyed with the idea of working harder to salvage the plants by staking and tying up every single one, but that would take a lot of time and supplies. And, seriously, they are corn plants. If the worst were to happen and the crop was a complete lost, we could just buy a few bushels of fresh sweet corn from someone nearby and freeze it.
So I did what I could, but life is busy and I only had a limited amount of time to work that morning. The week was another full one so I didn't have much of a chance to look closely at the corn except for maybe once a day. Life's busy distractions sometimes force me to be patient with certain matters.
But each time I saw the corn over the course of the week, it looked like it was recovering more and more, reaching for the sky. As of Saturday, most of the corn had, miraculously, stood upright once again ... just in time for the tassels to appear. The internal drive for living things to not only survive, but thrive, never ceases to amaze me.
Our corn crop will probably not be quite what it would have been had we not had this particular storm. Another storm may still come and not it all down again, at an even more inopportune time. But for now, the corn is doing fairly well again, even if the stalks are a bit crooked at the base.
The connection to and illustration of Anna's life was not lost on me this past week.
Sunday, July 12, 2015
Life updates
In the midst of Anna's birthday celebration and the family vacation, life continues to happen. The week after the party and before the trip was another good one. It was full, but planned full and together full.
The only real extra event that week was a visit from my godmother, whom we hadn't seen since our wedding. She met up with the kids and I at their acting class, then spent the afternoon/evening with us as well as some time the next morning. We had a great opportunity to reconnect with each other, and it was also a chance for her and our kids to meet and interact.
Besides Bonnie's visit, our family thoroughly enjoyed the fact that our next door neighbors were getting their driveway redone that week. Two different mornings, the kids (and maybe some adults, too) had breakfast out in the driveway so they could watch all of the machines work.
This past week was busy, but in a different way. A few moments of the week brought back memories from last summer, specifically the medical lingo, the separation, and the need for flexibility.
Tuesday night I remembered that the girls and I had appointments to get our hair cut on Wednesday morning ... oops. I need to do a better job of writing down the non-medical stuff on the calendar, too. Good thing Matt was planning on taking the day off anyway.
We all got a nice trim, Anna included. A few tidbits about Anna's hair, for anyone who is interested. Prior to cancer, her hair was light brown, almost blond, and very fine. She never had the thick, full head of hair that her sister has. We were told that with Anna's radiation treatment, the possibility existed that she would never regrow any hair.
As Anna's hair started coming back in, we noticed that it was very thin and sparse in the back by her biggest scar, which is where she received the brunt of the radiation. This lack of hair is pretty typical for someone who has had the kinds of radiation that she had; in fact, our nurse practitioner said that it's actually better than expected.
In the grand scheme of thing, thin hair back there is not a big deal. Once Anna's hair gets longer, you won't be able to notice unless you are really paying attention. But it will always be a reminder of what Anna has gone through.
Overall, Anna's hair is coming in dark, wavy, and very thick. We've been told that the color and texture of a person's hair can change after radiation and chemotherapy, but that it often continues to change for a few years as well. As with many things, we will just have to wait and see.
Thursday morning Anna had her periodic opthamology appointment. During the course of the exam, we learned that Anna will need to wear special prism glasses for awhile. Although we as parents didn't realize it, Anna still sees double at distances; her eye muscles got no better or worse in this regard since her last exam in January.
Specifically, the muscle that is supposed to pull her left eye into the straight position can't quite get there. Initially, the tumor was blocking the muscle from physically doing its job; then the radiation set all of her neuro-muscular system back to square one so her eyes were having difficulty tracking movements at all, let alone tracking together; and finally the rounds of chemotherapy caused such fatigue that those unconsciously controlled muscles just didn't have the energy to correct the issue completely. The doctor thinks that since Anna saw double for so long, her brain has gotten used to it and so it isn't going to fix this particular issue without intervention.
Thus the glasses. At first, the prism lenses will do all of the work to help retrain Anna's brain to see one image instead of two. Then they will gradually decrease the intensity of the lenses to challenge Anna's eye muscles just a bit at a time. Hopefully, Anna will eventually graduate out of the prism lenses.
No big deal, at least when you have the perspective that we have.
While at this appointment, I received a call regarding neuropsychological testing scheduled for later in the summer. There was a cancellation for Friday and would we like to take the spot. Yes, please!
What is neuropsychological testing? Good question. The specialists have a variety of forms, tests, mental exercises, etc. to help determine how someone's brain functions, especially how their brain learns. They gather as much information as possible from a variety of sources to try to provide parents and educators with some specific ways that a child's brain is different and how best to help them learn.
Any child who has undergone any kind of treatments for cancer typically has neuropsychological testing at some point. Kids like Anna who have had cancer within the central nervous system, not just medulloblastoma, often go through the testing multiple times. Since different parts of the brain mature at different times, some deficiencies may not surface until years after treatment, thus the need for repeat testing.
I spent Thursday afternoon trying to gather all of the information that I was supposed to have prior to the testing - 504 plans, IEP testing results, OT, PT, speech evaluations and reports, teacher forms, school testing results, our own forms, etc. I thought I still had six more weeks to get everything together, but plans change.
Friday morning Anna and I arrived at the main UW hospital at 8:00 a.m. for the testing to begin. I will admit that I was anxious and nervous about how all of the mental exercises were going to affect Anna. We were just coming off of the extreme fatigue of the previous weekend and I was worried that she would crash early and hard.
Of course, I worried unnecessarily. This kind of testing was totally up our daughter's alley. Mental challenges, memory tests, math problems, stories, etc. It's the kind of stuff she loves. As with any kid, she was allowed a 10 minute break every hour, more if she needed it (which she didn't). I advocated for a room in which Anna could lie down during her breaks; I think that helped a lot. She was also allowed a 60 minute lunch break, but after about 30 minutes of lying down, she started asking when she could get back to work. What other kid has fun during neurpsychological testing?
We finished up around 2:30, made a few stops at the Children's Hospital, and then headed home to play in the pool. Anna was ready to be physically active after thinking so much all day long.
Matt and I are scheduled to review the results with the neuropsychologist in a couple of weeks. As I told the doctor during the start-of-the-day interview, I don't expect too many surprises. As Anna's parents, we knew her the best before cancer, and we are certainly the experts on her now. But having the information documented in an official way will help insure that Anna receives whatever services to which she is entitled, especially at school.
And how did we manage all of these appointments and the need for flexibility? With Leah, of course! Leah will be helping us out again this summer, albeit on a much more limited basis than last summer. The kids took to her right away, but by Friday evening I certainly missed my Kate and Ethan and I'm pretty sure they were affected by the change in routine, too.
On top of everything is the garden. All the rain in June has created a green and growing jungle out there, but the cool weather seemed to stunt a few of the plants, too.
Our pea pods are finished up; the kids loved the fresh ones and I managed to freeze quite a few quarts. The broccoli was kind of hit and miss. I lost a lot of plants in May due to some strong winds; the plants were just twisted away from their roots. However, the plants that survived did very well and we are still eating and freezing some of the delicious fresh broccoli.
The beets were quite tasty, but Ethan told us over and over "I don't like beets. They aren't my favorite." To his credit, he tried one early on in the season, but gagged on it. I think it's the only food he's ever gagged on ...
The raspberries have been amazing this year; I'm hoping that at some point we'll be able to make some jam with the berries I have frozen.
Kate and Ethan have had a handful of cherry tomatoes already, but the big tomato plants are struggling with the weather. The cucumbers and summer squash are just beginning; I anticipate needing to pick the first big batch of green beans this week. Finally, if the weather holds up and we don't have any nasty storms just as the corn is tasseling, we should have a great corn crop.
Here comes another week!
Time for Prayers
Thanksgiving
Please give thanks that we were able to have a family vacation this summer.
Please thank God for all of the specialists who have worked with Anna, and who continue to work with her.
Please thank God for the flexibility of summer schedules.
Please give thanks that Leah is able to help us out again this summer.
Please continue to give thanks for the peace, patience, joy, love, wisdom, and kindness of those within and surrounding our family.
Requests
Please continue to pray for all those working with Anna and our family.
Please continue to pray for our overall health and well-being.
Please continue to pray for peace, patience, love, joy, wisdom, and kindness for those within and surrounding our family.
The only real extra event that week was a visit from my godmother, whom we hadn't seen since our wedding. She met up with the kids and I at their acting class, then spent the afternoon/evening with us as well as some time the next morning. We had a great opportunity to reconnect with each other, and it was also a chance for her and our kids to meet and interact.
Besides Bonnie's visit, our family thoroughly enjoyed the fact that our next door neighbors were getting their driveway redone that week. Two different mornings, the kids (and maybe some adults, too) had breakfast out in the driveway so they could watch all of the machines work.
This past week was busy, but in a different way. A few moments of the week brought back memories from last summer, specifically the medical lingo, the separation, and the need for flexibility.
Tuesday night I remembered that the girls and I had appointments to get our hair cut on Wednesday morning ... oops. I need to do a better job of writing down the non-medical stuff on the calendar, too. Good thing Matt was planning on taking the day off anyway.
We all got a nice trim, Anna included. A few tidbits about Anna's hair, for anyone who is interested. Prior to cancer, her hair was light brown, almost blond, and very fine. She never had the thick, full head of hair that her sister has. We were told that with Anna's radiation treatment, the possibility existed that she would never regrow any hair.
As Anna's hair started coming back in, we noticed that it was very thin and sparse in the back by her biggest scar, which is where she received the brunt of the radiation. This lack of hair is pretty typical for someone who has had the kinds of radiation that she had; in fact, our nurse practitioner said that it's actually better than expected.
In the grand scheme of thing, thin hair back there is not a big deal. Once Anna's hair gets longer, you won't be able to notice unless you are really paying attention. But it will always be a reminder of what Anna has gone through.
Overall, Anna's hair is coming in dark, wavy, and very thick. We've been told that the color and texture of a person's hair can change after radiation and chemotherapy, but that it often continues to change for a few years as well. As with many things, we will just have to wait and see.
Thursday morning Anna had her periodic opthamology appointment. During the course of the exam, we learned that Anna will need to wear special prism glasses for awhile. Although we as parents didn't realize it, Anna still sees double at distances; her eye muscles got no better or worse in this regard since her last exam in January.
Specifically, the muscle that is supposed to pull her left eye into the straight position can't quite get there. Initially, the tumor was blocking the muscle from physically doing its job; then the radiation set all of her neuro-muscular system back to square one so her eyes were having difficulty tracking movements at all, let alone tracking together; and finally the rounds of chemotherapy caused such fatigue that those unconsciously controlled muscles just didn't have the energy to correct the issue completely. The doctor thinks that since Anna saw double for so long, her brain has gotten used to it and so it isn't going to fix this particular issue without intervention.
Thus the glasses. At first, the prism lenses will do all of the work to help retrain Anna's brain to see one image instead of two. Then they will gradually decrease the intensity of the lenses to challenge Anna's eye muscles just a bit at a time. Hopefully, Anna will eventually graduate out of the prism lenses.
No big deal, at least when you have the perspective that we have.
While at this appointment, I received a call regarding neuropsychological testing scheduled for later in the summer. There was a cancellation for Friday and would we like to take the spot. Yes, please!
What is neuropsychological testing? Good question. The specialists have a variety of forms, tests, mental exercises, etc. to help determine how someone's brain functions, especially how their brain learns. They gather as much information as possible from a variety of sources to try to provide parents and educators with some specific ways that a child's brain is different and how best to help them learn.
Any child who has undergone any kind of treatments for cancer typically has neuropsychological testing at some point. Kids like Anna who have had cancer within the central nervous system, not just medulloblastoma, often go through the testing multiple times. Since different parts of the brain mature at different times, some deficiencies may not surface until years after treatment, thus the need for repeat testing.
I spent Thursday afternoon trying to gather all of the information that I was supposed to have prior to the testing - 504 plans, IEP testing results, OT, PT, speech evaluations and reports, teacher forms, school testing results, our own forms, etc. I thought I still had six more weeks to get everything together, but plans change.
Friday morning Anna and I arrived at the main UW hospital at 8:00 a.m. for the testing to begin. I will admit that I was anxious and nervous about how all of the mental exercises were going to affect Anna. We were just coming off of the extreme fatigue of the previous weekend and I was worried that she would crash early and hard.
Of course, I worried unnecessarily. This kind of testing was totally up our daughter's alley. Mental challenges, memory tests, math problems, stories, etc. It's the kind of stuff she loves. As with any kid, she was allowed a 10 minute break every hour, more if she needed it (which she didn't). I advocated for a room in which Anna could lie down during her breaks; I think that helped a lot. She was also allowed a 60 minute lunch break, but after about 30 minutes of lying down, she started asking when she could get back to work. What other kid has fun during neurpsychological testing?
We finished up around 2:30, made a few stops at the Children's Hospital, and then headed home to play in the pool. Anna was ready to be physically active after thinking so much all day long.
Matt and I are scheduled to review the results with the neuropsychologist in a couple of weeks. As I told the doctor during the start-of-the-day interview, I don't expect too many surprises. As Anna's parents, we knew her the best before cancer, and we are certainly the experts on her now. But having the information documented in an official way will help insure that Anna receives whatever services to which she is entitled, especially at school.
And how did we manage all of these appointments and the need for flexibility? With Leah, of course! Leah will be helping us out again this summer, albeit on a much more limited basis than last summer. The kids took to her right away, but by Friday evening I certainly missed my Kate and Ethan and I'm pretty sure they were affected by the change in routine, too.
On top of everything is the garden. All the rain in June has created a green and growing jungle out there, but the cool weather seemed to stunt a few of the plants, too.
Our pea pods are finished up; the kids loved the fresh ones and I managed to freeze quite a few quarts. The broccoli was kind of hit and miss. I lost a lot of plants in May due to some strong winds; the plants were just twisted away from their roots. However, the plants that survived did very well and we are still eating and freezing some of the delicious fresh broccoli.
The beets were quite tasty, but Ethan told us over and over "I don't like beets. They aren't my favorite." To his credit, he tried one early on in the season, but gagged on it. I think it's the only food he's ever gagged on ...
The raspberries have been amazing this year; I'm hoping that at some point we'll be able to make some jam with the berries I have frozen.
Kate and Ethan have had a handful of cherry tomatoes already, but the big tomato plants are struggling with the weather. The cucumbers and summer squash are just beginning; I anticipate needing to pick the first big batch of green beans this week. Finally, if the weather holds up and we don't have any nasty storms just as the corn is tasseling, we should have a great corn crop.
Here comes another week!
Time for Prayers
Thanksgiving
Please give thanks that we were able to have a family vacation this summer.
Please thank God for all of the specialists who have worked with Anna, and who continue to work with her.
Please thank God for the flexibility of summer schedules.
Please give thanks that Leah is able to help us out again this summer.
Please continue to give thanks for the peace, patience, joy, love, wisdom, and kindness of those within and surrounding our family.
Requests
Please continue to pray for all those working with Anna and our family.
Please continue to pray for our overall health and well-being.
Please continue to pray for peace, patience, love, joy, wisdom, and kindness for those within and surrounding our family.
Friday, July 10, 2015
To Indiana and back
Over the Fourth of July weekend we took our first family vacation in about two years. It was short and sweet and we all learned more about what will, and will not, work in terms of family vacations in the future.
For a few years Matt and I have thought it would be fun to take our kids back to northern Indiana to "see some of the sights" around Valparaiso University, where we both went to college. We thought it might be a good trip to do this summer since it was a relatively short drive (or so we thought) and there are a variety of interesting things to do without having to travel too far from a hotel.
So we did it. When all was said and done, Matt and I decided that we could either focus on the negative parts of the trip, or do our best to remember the good moments and simply learn from the other experiences. We are choosing to go with the positive perspective :)
We left on Thursday after lunch with the hopes of getting to Chesterton, IN, by dinner time. Unfortunately, Chicago traffic was TERRIBLE and it too much longer to get there than we had planned. However, the kids were great. They spent at least a half hour around O'Hare watching airplanes, got a kick out of all the tall buildings and the Chicago skyline, and just generally amused themselves. Whenever one of us got crabby, at least two others in the car were in a good enough mood to perk that person back up.
The hotel was decent, and we had a nice lakeside view from our room, albeit a rather small lake.
The rocks and wildlife just outside our room provided us with early morning and evening enjoyment.
Friday was our day for the dunes. Matt and I have history at Indiana Dunes State Park. Not only did we both visit the lake-shore during our college days, but it was also the location of our first camping trip together, as well as the spot where Matt proposed to me many years ago.
As a family we visited the nature center to learn about the ecology of the dunes, then headed for the beach.
The kids all got a kick out of the sand and the water, but they certainly did not like trying to keep sand out of their food at lunchtime. We packed up and moved away from the sand before pulling out our lunch.
After cleaning up and dealing with Ethan's meltdown, we ran down some dunes with Kate and then found one of the few trails that would work for Anna.
By that point, everyone needed a break from the activity and the sun, so we headed to the hotel for some down time.
In the evening we drove down to Valpo to visit campus and grab some dinner. The kids put up with Matt and I while we reminisced about our days in college, and our comments about how much campus has changed since we were students.
They all like experiencing the chapel,
but I think their favorite part was goofing off around the art exhibit called Borders that is set up on campus right now.
Dinner at Red Robin was a good end to a good day.
Saturday was our train day. In the morning we explored Taltree Gardens, a combination botanical gardens and garden scale model train layout. One of the coolest parts about the botanical gardens was a make-shift musical area amidst the trees. We could have spent most of the morning in that one small spot.
But instead we headed over to see the trains. Kate, Ethan, and Matt had a memorable time; the elaborate set-up was incredible. Ethan and Matt loved the trains themselves whereas Kate would have spent the entire day discovering all of the intricate nature and historical layouts.
The heat and inability to explore independently were starting to take their toll on Anna, in addition to all of the sensory input from the previous 48 hours. She remembers parts of the experience, but I don't think it was her favorite.
We headed into town to grab some lunch, and ice cream, at Valpo Velvet, the locally famous ice cream parlor.
At that point we had a decision to make. The final, and perhaps culminating, activity of the weekend was supposed to be a visit to the Hesston Steam Museum. About 15 years ago, Matt volunteered there every weekend one summer and we always hoped to take the kids there. It's a small attraction, but with great opportunities for fun and some wonderfully interesting people.
But Anna and Ethan were tired. We were either going to try to push through or head back to the hotel. If we went to the hotel for naps and rests, then we probably wouldn't make it to Hesston in time to do much before it closed. But if we kept going, we were at risk for meltdowns and fatigue.
Before this vacation, we hadn't truly pushed Anna to her limit and thus did not exactly know what would happen if we did. So we decided to keep going.
We are glad we went. A few of the guys Matt knew when he volunteered there years ago were still at the steam museum on Saturday ... And they remembered Matt. I guess he's a memorable guy ;)
Ethan had been looking forward to riding the trains all summer long. The experience did not disappoint him.
Kate, our nature lover, liked best riding the small trains through the woods with the wind in her face.
Kate also enjoyed sharing some treats with her mom and dad.
Yes, Matt has on glasses in this picture. After 37 years of not needing corrective lenses (except for that year in grade school, but that's a whole other story), he learned a few weeks back that he needs them. Perhaps this isn't the most flattering image of him with his new glasses, but it's a good one of him and Kate :)
Anna was tired. The heat, the new experiences, the jostling from being pushed around over unpaved surfaces, all of these things were getting to her.
We stayed until 5, then left with the plan of finding a park somewhere near the hotel for our last picnic dinner. But then the meltdowns started, both Ethan's and Anna's. Anna's was more severe. Without going into all of the messy details, we now know how extreme fatigue manifests itself in our poor child. By about 7:30 that night, while I was searching in the local stores for Pediatlyte, Tylenol, and a thermometer, my brain had switched over to crisis mode. In my mind I was planning out the phone calls we would need to make, deciding on the closest medical facility, and how I would describe Anna's situation, just in case we needed to go that route.
But we didn't need to go to that extreme.
In the meantime, before we knew just how bad it was for Anna, we found a park adjacent to some railroad tracks for our dinner. Our day of trains ended with being less than 50 feet away from multiple freight trains rumbling by.
The kids all crashed pretty early, Anna the earliest by far. No fireworks shows for this family ... that means we would ALL have to stay up well past 10 p.m.! I think we could handle the tiredness and crabbiness from Kate, but probably not from the other two. Maybe someday.
Sunday morning Anna was feeling much more like herself, thankfully. The kids just wanted to play together in the hotel ... a good sign that they were ready to go home.
We decided to do our best to avoid the holiday traffic and go the long way around Chicago. In the end, it took us about the same amount of time to get home, but we stopped a lot more on Sunday and experienced much more relaxing driving conditions :)
In all it was a nice family vacation filled with memorable moments, some good and some bad. We learned a lot about how to make this work in the future, especially in terms of preventing Anna's fatigue as well as what to look for in terms of accessibility options. We also learned that our handicap parking sticker can get us some pretty good parking spots :) We don't abuse the privilege, but truly understand now how an additional 100 ft. or more of traveling to and from a vehicle, especially over uneven ground, can make a big difference for some people.
We also realized that, even on trips like this, we may need to split the family up at times so Anna can rest and so Kate can have the opportunity to explore and experience life to her fullest capacity as well. We don't like being apart, especially on family vacations, but it looks like that may be necessary :(
Next update will include more about life in general, and all of the extras that have happened in the last few weeks outside of the family trip.
For a few years Matt and I have thought it would be fun to take our kids back to northern Indiana to "see some of the sights" around Valparaiso University, where we both went to college. We thought it might be a good trip to do this summer since it was a relatively short drive (or so we thought) and there are a variety of interesting things to do without having to travel too far from a hotel.
So we did it. When all was said and done, Matt and I decided that we could either focus on the negative parts of the trip, or do our best to remember the good moments and simply learn from the other experiences. We are choosing to go with the positive perspective :)
We left on Thursday after lunch with the hopes of getting to Chesterton, IN, by dinner time. Unfortunately, Chicago traffic was TERRIBLE and it too much longer to get there than we had planned. However, the kids were great. They spent at least a half hour around O'Hare watching airplanes, got a kick out of all the tall buildings and the Chicago skyline, and just generally amused themselves. Whenever one of us got crabby, at least two others in the car were in a good enough mood to perk that person back up.
The hotel was decent, and we had a nice lakeside view from our room, albeit a rather small lake.
The rocks and wildlife just outside our room provided us with early morning and evening enjoyment.
Friday was our day for the dunes. Matt and I have history at Indiana Dunes State Park. Not only did we both visit the lake-shore during our college days, but it was also the location of our first camping trip together, as well as the spot where Matt proposed to me many years ago.
As a family we visited the nature center to learn about the ecology of the dunes, then headed for the beach.
The kids all got a kick out of the sand and the water, but they certainly did not like trying to keep sand out of their food at lunchtime. We packed up and moved away from the sand before pulling out our lunch.
After cleaning up and dealing with Ethan's meltdown, we ran down some dunes with Kate and then found one of the few trails that would work for Anna.
By that point, everyone needed a break from the activity and the sun, so we headed to the hotel for some down time.
In the evening we drove down to Valpo to visit campus and grab some dinner. The kids put up with Matt and I while we reminisced about our days in college, and our comments about how much campus has changed since we were students.
They all like experiencing the chapel,
but I think their favorite part was goofing off around the art exhibit called Borders that is set up on campus right now.
Dinner at Red Robin was a good end to a good day.
Saturday was our train day. In the morning we explored Taltree Gardens, a combination botanical gardens and garden scale model train layout. One of the coolest parts about the botanical gardens was a make-shift musical area amidst the trees. We could have spent most of the morning in that one small spot.
But instead we headed over to see the trains. Kate, Ethan, and Matt had a memorable time; the elaborate set-up was incredible. Ethan and Matt loved the trains themselves whereas Kate would have spent the entire day discovering all of the intricate nature and historical layouts.
The heat and inability to explore independently were starting to take their toll on Anna, in addition to all of the sensory input from the previous 48 hours. She remembers parts of the experience, but I don't think it was her favorite.
We headed into town to grab some lunch, and ice cream, at Valpo Velvet, the locally famous ice cream parlor.
At that point we had a decision to make. The final, and perhaps culminating, activity of the weekend was supposed to be a visit to the Hesston Steam Museum. About 15 years ago, Matt volunteered there every weekend one summer and we always hoped to take the kids there. It's a small attraction, but with great opportunities for fun and some wonderfully interesting people.
But Anna and Ethan were tired. We were either going to try to push through or head back to the hotel. If we went to the hotel for naps and rests, then we probably wouldn't make it to Hesston in time to do much before it closed. But if we kept going, we were at risk for meltdowns and fatigue.
Before this vacation, we hadn't truly pushed Anna to her limit and thus did not exactly know what would happen if we did. So we decided to keep going.
We are glad we went. A few of the guys Matt knew when he volunteered there years ago were still at the steam museum on Saturday ... And they remembered Matt. I guess he's a memorable guy ;)
Ethan had been looking forward to riding the trains all summer long. The experience did not disappoint him.
Kate, our nature lover, liked best riding the small trains through the woods with the wind in her face.
Yes, Matt has on glasses in this picture. After 37 years of not needing corrective lenses (except for that year in grade school, but that's a whole other story), he learned a few weeks back that he needs them. Perhaps this isn't the most flattering image of him with his new glasses, but it's a good one of him and Kate :)
Anna was tired. The heat, the new experiences, the jostling from being pushed around over unpaved surfaces, all of these things were getting to her.
We stayed until 5, then left with the plan of finding a park somewhere near the hotel for our last picnic dinner. But then the meltdowns started, both Ethan's and Anna's. Anna's was more severe. Without going into all of the messy details, we now know how extreme fatigue manifests itself in our poor child. By about 7:30 that night, while I was searching in the local stores for Pediatlyte, Tylenol, and a thermometer, my brain had switched over to crisis mode. In my mind I was planning out the phone calls we would need to make, deciding on the closest medical facility, and how I would describe Anna's situation, just in case we needed to go that route.
But we didn't need to go to that extreme.
In the meantime, before we knew just how bad it was for Anna, we found a park adjacent to some railroad tracks for our dinner. Our day of trains ended with being less than 50 feet away from multiple freight trains rumbling by.
The kids all crashed pretty early, Anna the earliest by far. No fireworks shows for this family ... that means we would ALL have to stay up well past 10 p.m.! I think we could handle the tiredness and crabbiness from Kate, but probably not from the other two. Maybe someday.
Sunday morning Anna was feeling much more like herself, thankfully. The kids just wanted to play together in the hotel ... a good sign that they were ready to go home.
We decided to do our best to avoid the holiday traffic and go the long way around Chicago. In the end, it took us about the same amount of time to get home, but we stopped a lot more on Sunday and experienced much more relaxing driving conditions :)
In all it was a nice family vacation filled with memorable moments, some good and some bad. We learned a lot about how to make this work in the future, especially in terms of preventing Anna's fatigue as well as what to look for in terms of accessibility options. We also learned that our handicap parking sticker can get us some pretty good parking spots :) We don't abuse the privilege, but truly understand now how an additional 100 ft. or more of traveling to and from a vehicle, especially over uneven ground, can make a big difference for some people.
We also realized that, even on trips like this, we may need to split the family up at times so Anna can rest and so Kate can have the opportunity to explore and experience life to her fullest capacity as well. We don't like being apart, especially on family vacations, but it looks like that may be necessary :(
Next update will include more about life in general, and all of the extras that have happened in the last few weeks outside of the family trip.
Subscribe to:
Posts (Atom)