Sunday, June 3, 2018

Motherhood

May is bike month.

Riding a bike is fun. It requires some skill, but with practice and time you can get good at it.

May is also Mother's Day.

Being a mom is also fun. It requires some skill, but due to the unpredictability and volatility of half the parties involved (namely--kids) you can practice and take time and still not feel like you're good at it.

When I've heard moms talk about how being a mom is hard, I imagined they were talking about the dishes, laundry, grocery shopping, meal planning/making, changing diapers, running errands, paying bills, and--oh yeah--taking care of the kids, too. That's not what I find hard. Most of the time, what's hard for me is being bored. I'm busy, yes, but I'm bored. Being a mom takes a lot of mental strength that I never knew I didn't have. Not strength for when there are major trials--surgery, moving, illnesses. Most moms are able to step up to the plate when those things come around, which they always inevitably do. I mean strength for the down time. For the HOURS of the day where the little guys want entertainment. For answering "why?" for the bazillioneth time today. For when you haven't had enough adult conversation. For when you are asked to read that one book...AGAIN. To be able to listen to that CD of primary songs on repeat. For having to share a bite of anything you try to eat, no matter how sneaky you try to be. For not being able to read a book, go to the bathroom, play the piano, or do anything without a little sidekick or curious eyes staring at you.

Being a mom is hard.

When people like to ride bikes they might ride every day, or even go on a 100 mile ride. But then they get off their bike and do something else. No matter how much they love cycling, at some point they stop riding. I think I could use some practical, actually possible ways to get off my mom bike. I love being a mom. I chose it. I'll choose it again. But it's nice and necessary to stop sometimes. I need to refill my mental strength.

Some of my thoughts for moms:

If your 2-year old doesn't eat his dinner...or his breakfast the next day...or the yogurt you gave him for snack after that... it's okay.
You can take a break without having to "deserve" it.
It's okay if you want to be helicopter parent your child sometimes.
There is no justification needed if you want to take a nap.
It's okay for your home to be messy sometimes--even if it's simply messy because you don't want to clean it, and not just because you're too busy to clean it.
There's no need to "Excuse my ______" in every picture you post of your life.
Who says you "should"?
You don't "just" anything.
You're doing a good job.

Monday, April 30, 2018

Ups and Downs

How I expected Evan's cast removal to go: Casts come off. Start standing day 1. Start walking with walker day 3-4. Start walking independently after a week. Post inspiring pictures and videos of Evan's progress.

How it actually went: Casts came off. (Why did nobody warn us this would actually be scary, traumatic and not that much fun?) Walking boots came on. We went home and tried to excite him about standing by counting how long he could go without holding on. Day 1 was about 30 seconds. He even cruised along the couch. I felt good about that. Things were going as planned.




After that, nothing happened. For about a week he regularly complained about foot pain and had to be forced to walk at all. I tried to be patient, but I expected progress every day, and some days didn't seem any better. 10 days after casts came off, Evan finally said his feet didn't hurt. He stood up after breakfast and said, "You're gonna like this," and then he up and started walking independently for the first time since surgery. I filmed him going across the entire kitchen, and cut the video right before he fell.


Since then he is back to complaining of pain and he hasn't wanted to walk anymore. He limps when he uses his walker, so I think there really is some pain, but he's also scared. "What if I fall?" I had to show him videos of when he first learned to walk. He would fall and stand right back up to try again. "That's what you'll do! You'll get right back up and keep trying!" He's not convinced. This conversation says a lot about our last 2 weeks:

Evan: What chores am I going to do?
Me: You're gonna practice walking.
Evan: No, but like when you pick 3 chores for me to do.
Me: I don't care about chores. I care about your walking.
Evan: I don't care about walking.

He's very content in his wheelchair and he's very uncomfortable walking. Probably the best thing our friends and family can do is to not ask when he's going to walk. I don't know. I just hope that one day he will. This was tonight and is pretty typical of his current ability.


Meanwhile... my new hobby is taking pictures of my sleeping baby.





He comes into my bed nearly every night and I don't usually notice until the morning. I don't entirely mind because he's so tiny and he's so cute when he's sleeping.



Isaiah and I have gone on a few one-on-ones with the children recently. First, Isaiah took Seth to Home Depot and out for a milkshake while Evan and I rode bikes to Big Horn and watched cars drive by. Then Isaiah took Evan golfing with Uncle Josh and I took Seth bowling.





Seth can now ride his bike independently!


Saturday, April 7, 2018

A Few More Days

Would you rather be in a wheelchair from birth or have experienced walking and then have to be in a wheelchair?

Sympathy cast for Maya



Weeks 2 and 3 of casts were really rainy. Only sorta inconvenient for the wheelchair, but super bad for casts. One afternoon, when the rain finally cleared, I took my crew on a walk around the block. About 1/4 mile from the house, an instantaneous rain/hail storm started out of nowhere. I rushed to take my jacket off and wrap it around Evan's casts. I threw Seth on top of Evan, and I ran with the wheelchair and two wet, crying boys all the way back home..at which point the rain completely stopped and the sun shone like nothing just happened.


Costco, Home Depot, and IKEA have been favorites for speed-wheeling freedom.




The expression behind his face is why Isaiah and I have so few pictures together
I better appreciate handicap parking now. I've used it plenty of times before, but now I feel like those spots are more sacred. At first, if all the handicap spots were taken at a store I thought, "I bet the people who parked there would feel badly if they knew how far away we had to park and then walk with the wheelchair." But then while Evan happily pushed his wheelchair through the parking lot and I easily walked beside him, I realized we actually have it pretty good and don't need those spots so badly after all. 

Also, I've been very grateful for the storage space in our van. Transporting the wheelchair in our old car would have been a much bigger challenge.

Also, I'm happy that Evan is just small enough to fit in a cart when we go to "fancy" stores where I don't trust him to maneuver his wheelchair. 


Evan and Grandma Hudson (and Seth is starting to catch on) have a tradition of "rockin' and talkin'" on Grandma's front porch when we go to visit.


Grandma Garrett (my mom) stayed with us last week. Her tradition with the boys is cookie making/decorating. We also made an effort to do activities that would hard for me to do alone. Duck pond, library story time, temple, kayaking, World of Wonders science museum, playground. I got to grocery shop alone and go on a date with my husband. At the end of the week she concluded that Evan is a rock star. He makes this whole experience easy.








The boys are obsessed with PJ Masks, so seeing geckos at the temple was a real treat.

We had only been at World of Wonders for a few minutes when one of the workers came up and started talking to us. He was in a wheelchair and seemed to take special interest in Evan, so he gave us the insider tour of the place, showing us things that most people didn't get to experience fully.






This swing got me thinking the most about accessibility. This is a wheelchair swing at an "accessible" park. Meaning, the park has ramps to go up to the top of the playground. Think about that...so my 5-year old struggles to push himself up a skinny hill only to get to the top platform where he blocks everyone else from going down the slides that there's no way he's able to go down. That's an accessible park, for you, my friends. But look--an accessible swing! Meaning, a swing that requires you to go to the community center to get a key to make the swing work. Only 5 people were on the list for checking out keys before me. Until Evan rode the swing I had never seen anyone use it. My playgroup friends were surprised when I said this was the only accessible park around, but I can see why a city would not consider increasing accessibility a priority when only 5 people have ever requested to ride the wheelchair swing.

Evan preferred the regular swing, anyway.


Accessibility is a tough issue. There's really a limited profile that would use a wheelchair swing. First, you need to be in a wheelchair. That, alone, cuts down the numbers tremendously. Next, you have to want to go on a swing... which likely means you're young. You would also not be able to get on a regular swing--either because you're too big to transfer or you lack trunk/arm control. We're down to the 5 people who have requested keys for the swing. And this is why there are not more accessible parks.

But how terrible for some people to be limited by an environment that lacks accessibility. Lacks equality, I guess you could say.  Prior to this cast/wheelchair experience I would have argued that more often than not it's the person limiting themselves. I thought if they really wanted to be involved or participate in something then they would be able to. But it's been hard, even for 5 weeks, to think of activities where Evan could be equally involved as the rest of us. I've tried SO so hard to not say, "We can't do that because of your wheelchair," but it has not always been possible. And then I'm grateful that I can tell him, "We'll do that when you're not in your wheelchair anymore." And then I feel guilty that he gets to be done with his chair and some people don't. Ugh. It's tough.

After a month off-track, Evan started back at school. I felt guilty that I felt so relieved to have him gone. It only had a little to do with his wheelchair, though. Every time we reach the end of a month off I'm very ready for him to go back to school. I can't even imagine a 3-month summer break once he's on traditional schedule. The school district has been very wheelchair friendly. They only buy wheelchair-accessible buses so he didn't need to change drivers or anything, and his teacher is happy to work with him. I'd be interested in seeing how he actually gets around his school and classroom, but he says it's all good.


Seth and I have fun when Evan's gone, playing with latex balloons that Evan has to avoid due to his potential latex allergy. 




Foot massages with my Seffy boy while Evan is at school
Easter was the sweetest. (no pun, intended) The Easter Bunny hid many eggs that were at Evan's crawling level, but some were high and some were far away. I was happy to assist in grabbing high up eggs that Evan would point out. Then Seth would run and grab two far away eggs and bring one to Evan and keep one for himself--without anyone even asking him! Such a sweetheart!



I have seen Seth's kindness towards Evan a lot lately. He is growing up learning compassion in such a unique way. I hope that never changes.



Saturday, March 10, 2018

The First Week

1 week down....5 to go!

I may have shared this idea before, but it's come up again: Everyone should have really hard trials so they can feel what it's like to be lifted up through prayer, to be given God's power to do hard things, and to see God working through the earthly angels around you. I keep feeling so happy by all the service being done to us but then I feel guilty being given so much when I know that other moms could use this service too. Maybe the message is we should all serve each other more even if our kids haven't just had surgery. The receiving end of service feels so good.

Day 1 post-op was ok. Evan woke up well, but was still groggy all day. People would come in to check on him and he would say, "I'm going to have surgery and then I'll be in a wheelchair." They would look confused and I would clarify to Evan--You already HAD surgery. That's why you have those casts... He was kept well-stocked with pain meds and didn't have much of an appetite. He seemed to be most bothered by having to keep his legs elevated. He kept scrunching them up near his chest which would push the pillows away and put pressure on his heels. Getting comfortable was tough. He really wanted to be in his wheelchair (which he didn't even have yet). We watched shows, tried (unsuccessfully) to nap, talked to a lot of doctors and nurses, ordered dinner, gave him leg rubs with lotion. Seth had a really hard time being in the room without destroying something or doing something dangerous, so we kept rotating which parent would take him for a walk or go play downstairs while the other stayed with Evan. I don't remember what happened at night to set Evan off, but he was mad and grumpy and uncomfortable and exhausted. Isaiah managed to find a wagon and Evan got to take a quick ride around the floor before bed. Isaiah drew the short straw and stayed with Evan through the night. Seth and I slept like angels. Isaiah sent me videos of Evan singing along to Moana, a little bit happier than when I had left him.



Day 2 I got a 5 am text to bring food quick! Mr. HANGRY pants was awake. Seth and I quickly dressed and ran up with a banana, cereal, and a yogurt. Apparently Evan could not wait for the 8 am chocolate chip pancakes we ordered. Isaiah left with Seth to go take a nap downstairs after a less-than-restful night. He said Evan had slept in one-hour stretches. Poor stomach sleeper being forced to stay on his back, not to mention the bi-hourly medicine interruptions. The nurses said pain management was more important than sleep over the first 24 hours as the anesthesia was wearing off and his actual pain level was becoming apparent. I got Evan dressed to help him feel a little more normal (the nurses thought it was hilarious that he picked a "fancy" shirt to wear). He took a short nap. Next we just needed to start crossing things off the list to be discharged.


Note that any smile pictures for the first 48 hours were forced. He was most likely mad before and after the picture was taken.

1. Blood draw. This was the worst. Evan was not prepared and was panicking and screaming. The first nurse missed his vein so they left and said they'd let him calm down and try again in 15 minutes. During that time I had a heart to heart with Evan about how much I'm scared of needles but I had to have a lot of IVs when I was pregnant with him. We cried together about how hard his situation was and how crummy it is to have surgery and have all these people bother you. I told him they had to check his blood before we could go home, and if he did everything he needed to, we could go home today and sleep in his own bed and not have anyone wake him up. When the second nurse came in, she let me sit by him in bed. He squirmed and squeezed my hand but I don't think he even cried the second time. Check!

2. Remove the drain bags from his legs. After surgery, the injury swells. To ease the swelling, in addition to elevating the legs, the doctor put a little hole in the skin above his incisions and placed a catheter-type tube inside, with a pouch at the end. These pouches were collecting blood that would otherwise be pooling around the incision. It was disgusting, actually, because the bags were just hanging outside of his casts. In the morning the doctor came in and simply pulled the tubes out. They had done their job. Check!

3. We were initially told Evan needed to meet with PT/OT before leaving, but the doctor said they would basically be useless and he didn't need that. Thank you! Check!

4. Get a wheelchair. With having surgery scheduled for over a month, you'd think that getting a rental wheelchair would have already been arranged, right? This was UCSF's error. They didn't reach out to a wheelchair rental place until the day before surgery, which is not enough time to get one delivered to our house. We hoped, then, that they would send us home with a hospital wheelchair. Turns out they didn't have one his size. They better thank their lucky stars that I brought a stroller, anticipating that might happen. Check!

5. Remove IV. Pack up. Head out! We were out of there at 11 am. Earliest discharge we've ever experienced. While I was grateful for this, it did make me start to feel like, "Wait, are you sure you don't need to keep him on monitors a little longer? Are you sure we can take care of him on our own?!"

Seth fell asleep in the car before we pulled out of the UCSF parking lot. Evan took a short nap, but as his pain medicine wore off he started complaining that his legs hurt. It was a bit of a rough drive after that, trying to distract him from the pain. He was mad. He was hurting. And we didn't have anything to give him until we got home. I started thinking, "What did we get ourselves into?!" At home we quickly gave him Tylenol, then picked up Oxycodone at the pharmacy and gave him that as well. Someone from our ward brought dinner that night and we rented Coco. Evan slept like a baby on a trundle bed next to ours.

On Sunday he was a new person. Honestly, if we had a wheelchair I would have taken him to church. We started spacing out his pain meds as needed. We all napped. Someone brought dinner again.

On Monday someone watched the boys so I could go grocery shopping. Our friends came to our house for play group since we couldn't go out without a wheelchair. We started giving Evan short moments without his legs elevated. He laid on the floor and experimented with crawling. I'm starting to get used to this whole people bringing us dinner thing.

On Tuesday someone babysat Seth so he wouldn't get to stir-crazy and so I could spend one-on-one time with Evan. He is still taking daily naps and eating like a bird at this point but he said he's not in pain and so he stopped taking all pain medicine. I was surprised when I went out to check the mail and found a wheelchair delivery truck in front of my house. Finally!!



Wed, Thurs, Fri brought the new experiences of taking the wheelchair to a store, library story time, grocery shopping (I don't recommend doing this without a second adult), a park, and a restaurant.



So far, one week in, things have been overall easier than expected. I think some reasons why are: 1) The casts are below the knee, 2) He is not experiencing pain--at most he says his legs are tickly, 3) Friends have brought crafts, books, activity bags, food, letters, and 4) Fasting and prayer. As far as life in a wheelchair goes, I think it's easier when we know it's temporary, when I can still easily carry Evan in and out of his chair, and when his chair is small enough to pack up and carry on my own. Also, people are really kind and often offer to help.

Monday, March 5, 2018

Surgery #4

Tibial Osteotomy

We went to San Francisco on Monday to meet with anesthesia and the orthopedic surgeon one last time and sign consent. There was a child life specialist who met with Evan and went through a whole role play of what to expect on Friday. They had little doctor dolls with masks and hair nets, and they had a little doll with a hospital gown. They had a miniature operating table, a tiny IV and a little mouthpiece for anesthesia. She let Evan control the scene and told him everything that would happen. Then she gave Evan his actual breathing mouthpiece and let him choose a scent to put in it for comfort. He chose chocolate.

We had a check-in time of 5:30 am for a 7:30 start on Friday. We were SO blessed to get a room in the Ronald McDonald House on the 1st floor of the hospital. We were able to stay there Thursday night to avoid such an early drive on Friday. A miracle happened Thursday night. We all got into our room, laid down in bed, turned off the lights, and... SILENCE. Seth--who typically jumps in bed, cries, plays with toys, leaves his room a million times, and takes two hours to fall asleep--was SILENT, and went right to bed. I was amazed.

In the morning, Evan and I went up to the 2nd floor at 5:30. We watched the Minion movie in the waiting room. The child life lady was there with Evan's mask. She brought him into a room to decorate it with stickers and rub the chocolate scent in it. Isaiah and Seth came and joined us. Then we went back to the pre-op room. There was a tablet where Evan played a donut game. Seth did lap after lap around the floor in the wagon and cozy coupe taxi. We pointed out all the animal decals on the walls. I kept waiting for the point where Evan would get scared. Maybe once we were in pre-op? Maybe once he had his hospital gown on? Maybe once they started wheeling him to the OR? Maybe when they started anesthesia? It never happened. He was so calm. His only crying that morning was prior to going up to the waiting room when he was so eager to leave that he wouldn't let Isaiah give him a blessing.


I went back to the OR with Evan. One of the doctors said she has a 20-year old son with spina bifida, and another said that Evan already had a special place in all of their hearts for that reason. They scooted him onto the operating table, he breathed through his chocolate mask for about a minute while we talked about chocolate brownies and chocolate syrup, and then his eyes fluttered closed. I gave him a kiss, (cried a little), and left. The doctors told me they'd take good care of him.

We received text updates about every hour letting us know, "The procedure is in progress.", "The patient is doing well.", "The procedure is going well." We took a walk outside, played on the grass hill, and bought Evan a "Get Whale Soon" balloon. I was again so grateful to have a room in the Ronald McDonald House so we could relax and Seth could nap. About 1 or 2 o'clock we got the message to go to the waiting room. Isaiah went up and got the report from the doctor that things went well. After a little while he was able to go back and see Evan, whose first request was to play the donut game again.

The thing I was most nervous about with the surgery was him waking up afterwards (or rather, not waking up). This is a fairly basic surgery with limited risks, but it was almost exactly 3 years ago when Evan had his shunt surgery (also pretty standard) and didn't wake up when he should have, leaving us wondering if he was brain dead. Even though I was receiving positive texts about this osteotomy, I was not relieved until I knew Evan was awake and responding afterwards. Thankfully that happened much, much faster this time around.



About the osteotomy: Evan's feet pointed in. In looking at his legs, you could see he had some turn in from the hip to the knee, but the majority of rotation was from the knee to the ankle. From what she described (obviously I can't see it yet), the surgeon made a two inch vertical incision at each ankle. They opened things up, put protection around the bone to avoid injuring the soft tissue, and then cut both the tibia and fibula. At that point they rotate the foot and basically eyeball his foot to line it up with his knee. Then they put in a plate and screws which holds everything in place until the bone can heal. They cut at the bottom of the tibia because it's a good place for healing. They cut the fibula also to avoid straining the ankle after the rotation. I still don't entirely understand how it works, but I know his legs are now straight for the first time in his life.

Prior to surgery we thought he would be put in casts up to his mid-thigh. The surgeon said she had never performed this surgery on someone as young as Evan so she wasn't sure if there was a plate that would fit him. She said they would try to use a plate and screws because it is the most secure, but if it was looking too big and awkward then they would do pins. The pins are not as secure so they would have needed to cast higher up for stability. We were super relieved that the plate worked and his casts go to just below the knee. I'm glad Evan was okay with the length. I'd only told him a thousand times exactly where his casts would go up to on his legs. He also had memorized the spiel, "I'm going to have surgery and then I'm going to be in a wheelchair." After surgery he kept repeating that. I told him he already had surgery...that's why he had casts on. He was extremely confused why he wasn't in a wheelchair yet. "Where's the wheelchair?" "When am I going to be in a wheelchair?"




Tuesday, February 13, 2018

Corrections

I've been overwhelmed by the support and concern for my family. Thank you.

The amount of kind words and praise for my mothering makes me feel like I'm not getting the true picture of my life across in this blog. As I'm typing, Seth is crying in the dark garage for the 2nd or 3rd time tonight (probably won't be his last) because he has gotten out of his bed AGAIN. I've spanked him today, too. And yelled. And put myself in time out. I want to make sure a balanced view of my life is being portrayed here.

I'm still learning a lot. I was most surprised today to hear from multiple people who are unaware of the social stigmas surrounding epilepsy. I'm so grateful for that! I hope I'm in a minority of [previously] ignorant people. I am grateful for a few people who have shared their epilepsy stories, most of which were new to me. Another important thing I learned today is that, "Epilepsy stereotypes exist because people with reasonably well-controlled epilepsy often don't talk about their seizure disorder or reveal it to their friends and co-workers out of fear of repercussions or epilepsy stigma. 'It's the people who have the most severe, poorly controlled epilepsy who define these epilepsy stereotypes because they more obviously represent the condition.'"1 The more people share their stories, the fewer exaggerated and incorrect stereotypes.

Today I had to reflect on why I have this stigma in my mind. I believe it came from one particular person I knew who had epilepsy. This person struggled academically and socially, and I assumed it was because of the epilepsy. With me being young at the time and that being my first experience with epilepsy, it stuck--even though everyone I've met with epilepsy since then has not struggled in those same ways. As I met more people with epilepsy I merely adjusted my thinking from "People with epilepsy are affected mentally" to "People with epilepsy CAN be affected mentally," and that's what I honestly believed until yesterday. I researched Googled "epilepsy social stigma" and found a super helpful article that quickly debunked my misconceptions.

I'm copying from this article1: https://www.everydayhealth.com/epilepsy/overcoming-the-stigma-of-epilepsy.aspx


"The most prominent epilepsy stereotype is that epilepsy is a mental illness... In actuality, individuals with epilepsy do not have a mental illness derived from their seizure disorder. However, people with epilepsy are at higher risk for depression, anxiety, and illnesses pertaining to low self-esteem."

Other epilepsy stereotypes include the following:

Epilepsy stigma: Epilepsy is associated with neurological disabilities, such as developmental delay.
Epilepsy truth: "The majority of people who have seizure disorders do not have neurological disabilities," Dr. Haltiner says.

Epilepsy stigma: People with epilepsy are violent.
Epilepsy truth: "During a seizure, a person may appear frightened, confused, angry, or combative, but violent behaviors are not associated with epilepsy," Patternak says.

Epilepsy stigma: People with epilepsy cannot hold a job.
Epilepsy truth: "Although some individuals may have restrictions - such as driving, lifting heavy objects, or climbing ladders - many people with epilepsy are able to successfully work," Patternak says.

I'm still trying to figure Evan out, but now I've learned that if he has social or developmental delays, it's not because of epilepsy. Thanks for helping me learn that. It's a lot less scary now that I know the truth.