Keepin On Keepin On

Lyle Lovett sings a song about flying shoes. Well, it may not actually be about flying shoes, but that’s my favorite line. This week especially, I’ve felt like “flying” shoes.  Just in case flying shoes means something weird, I’m talking about throwing shoes, literally. That’s not a very deep thought, I realize but it reminds me of this: songs sometimes say the things we don’t want to, don’t know how to, or just don’t.  And sometimes, they just make us laugh. So now I’m going to avoid sad songs & songs that make me think, and just start listening to Raffi, or rap. I haven’t decided yet. 

This past week feels blurry in so many ways.  Or I’m blurry and this week just feels.. I can’t tell. For those close to me, I’ve had a lot of rules lately when I talk on the phone, or talk at all. I say I’ll talk, but I don’t want to talk about anything sad, or I have rules for them: they are to tell me something funny right away.  I cover my face if I agree to talking, or hide inside my sweatshirt- like a turtle.  Turns out, I’m bossy.  Things happen we have no control of, life keeps moving forward, and I’m usually trying to stay positive. Sometimes though, the ‘try’ doesn’t work and I don’t want to face all the rest at once.  I’ve cried more lately, but my ‘try’ is finally working again. So, I think I’m baaack. 

I met with Kaitlyn’s doctor Thursday. We talked to the neurologist in SF together by phone conference with Kaitlyn’s nurses as well.  During our phone conference, Kaitlyn’s caring doctors and devoted nurses explained how things have gone this last year, and these last few months especially.  We talked about services that are available to help Kaitlyn, and the kids and I together. Respite care, more help, occupational feeding therapy, and a social worker to guide us, are all in the works; and on their way. Nothing they said about Kaitlyn was new information, because I watch Kaitlyn go through the list we spoke of, every single day. She doesn’t walk nearly as much as she used to, she walks differently when she does, she's weaker, her speech slurs in intervals, her seizures are awful, sometimes she feels like she can't swallow, her body flails, she hurts, she doesn’t eat more than a few bites in a day-if at all, she rarely drinks, tube feedings aren’t going well, she vomits a lot, she’s losing weight again and she seems to be getting worse.  They said that this may be neurodegenerative, and that we may not know a specific diagnosis, as frustrating as that may be.  No one is giving up, and we’re going to do everything possible to make Kaitlyn better, more comfortable, and to always move in a productive-positive direction. Even though nothing we talked about was new, it felt bigger.  And even though those big things I know,  what I want to hold on to and focus on, is that smile she’ll still give me, how she got flowers for the first time from a boy this week, she met Daisy-the SAR bloodhound, that she colored in a coloring book, made me a picture last week, asked for more Mozart music, that she says “Mama” whether she’s happy or sad, that she whispers she loves me no matter what.   

Kaitlyn smiles when I make no sense, she asks me questions in between everything she goes through, she giggles, even if it’s a whisper some nights. Kaitlyn is so Kaitlyn, and that’s what I’m holding on to. 

Some of the things Kai has said this week: 

"Mama.. sometimes I say things that aren't really from my heart- but they do get you to say yes."

"I think I have a fever, the kind with no numbers. Also, my legs are both broken, and my stomach hurts. I don't think I'm breathing. I better stay home, with you, for 17 weeks."

"I'm so confused. I can't decide: do I want to be a pilot? Or am I sticking with police? This is serious."

"If I fall asleep and you don't snuggle me, I'm probably going to taken by bandits. Or zombies. But if you let me sleep with a flashlight and my police stuff, I'll be fine."

"I sometimes throw away my carrots."

"If God looked in my brain, sometimes all he'd see is that I like candy. And badges." 

"I decorated the car windows all with 'I love you' so you can be so happy about driving today. But I nearly froze my finger off doing that."

Search & Rescue

           

When I joined Search & Rescue (SAR), I had this plan.. the plan was to be on a team, help my community, learn as much as possible, participate fully, and learn how to be in nature and not freak out.  Everyone I met, I admired right away. This group of selfless people all joined together is one of the best things in this world to witness.  I wasn’t sure I’d fit in, or that they would take me as I was- and the only thing I regret, is ever wondering that. From the moment I was interviewed, I felt at home and completely, indescribably inspired. Sometimes those don’t go together, but in SAR, they do.

 

My first training was about tracking. I just stumbled on those notes.  We got to look for footprints in dirt, noticing angles of light and how that works against and for us, measuring strides, and noticing patterns and grooves in shoe prints. It was challenging, but so much fun. Everyone works together, laughing all along the way. Tracking involves looking and seeing from an entire different light, perspective and a new way of focusing. As does parenting, and reacting to life’s huge changes to which we are in no control of. 

Balancing life as a single mom isn’t always the easiest, but it’s worth every second. The night before the second training one member called me. “Do you want to bring your kids? They can be victims.” I had childcare that day, but canceled it. That was the start of SAR for the kids, they got to be involved and I felt so completely honored to experience a day like that with them. That entire day is a cluster of memories that I’ll never forget and will always appreciate. Kaitlyn was all smiles, Kai was carried around in a stokes basket and had fake injuries adhered to his arm. The moment he saw the sheriff helicopter take off changed him. His eyes got big, he was completely focused, in love with life,  in awe.. and completely inspired. This is one of many effects SAR and Kaitlyn have in common. 

As Kaitlyn’s health declined, SAR never gave up on me. The opposite happened. They lifted us up and took care of us.  After one hospital stay last year, we came home to a sheriff’s hat for Kai and a stuffed bear on the front steps. Kai wore that hat every day until it feathered to nearly shreds.  This year as hospital visits clustered and I started to miss trainings and meetings, they rallied around us and started fundraisers, established a trust fund, brought Kai on adventures, came to see Kaitlyn and showed us what family is all about. SAR will tell you from the start, “family first”. It’s part of training and knowing when to go to a search, and when not to. SAR family is like no other. I don’t even know the magnitude of their help, because they won’t say it… they just do it. And when I get stubborn and say I’m ok, someone says “we’re here, and you’re not alone”.

When we were in Oakland, and my heart felt torn in a thousand different directions, a SAR member who is a pilot, rented a plane with another SAR member and brought Kai to see Kaitlyn & I. ON A PLANE. Seeing Kai walk down the hall of the hospital with them, made everything ok. His expression was full of love and adventure. We all got through the rest of that experience because of the help and incredible efforts given to us.

People ask me, “How do you do this?”. I never have an answer that makes sense.. but I know I do this because I have the support of this community, of my SAR family, my family and friends. We are in this together and loving Kaitlyn is easy. 

Making Bread

I love the bread making process. Actually, technically speaking, I used to like it. You do things a specific way, add ingredients at the right time, the right temperature and eventually, at exactly the right moment- wa-la… (wait for it)…bread occurs. I used to love making bread. Not that I loved the process all the time, because my kitchen and I were floured, but what happened when things went according to ‘plan A’ - it looked, smelled and tasted like bread. A duck is a duck when it walks,  or some fancy duck saying like that. Right? What’s my point? Today was not bread!  

Kaitlyn started today off at 2am in her own vomit. There’s no pretty way to describe that. I probably just ruined ever again eating bread for going straight to vomit talk.  It was as awful as it sounds. I got her cleaned up as I stumbled around in a tired mom fog.  She looked up at me, having no idea how vomit got on her. “maybe something leaked, I didn’t do that.” But then she vomited again. “well.. that was me.” Tube feedings aren’t my favorite.  The machine beeps when I finally get to the almost sleep moment. These feedings are keeping her ok, and of course I am thankful for that. This is getting calories in her, but she’s not tolerating them very well.  Then Kai was up to tell me he wasn’t sleeping. That he wanted pancakes when the sun came out. He wanted to know if it was tomorrow yet, or still tonight. And he’d like to go to the airport. And…. I lost the rest of what he said.

4am, Lyle Lovett  is playing in the background and I’m giving Kaitlyn pedialyte in 15 MLs, in 15 minute intervals. 15 is now a lame number to me. As is 4. And all the sudden I’m stuck in my head, worried that I’m about to be 52. Is that when I buy a cat? 

7am- up (still) to get Kaitlyn’s medicine regime started, and  Kai ready for the sun he talked about. Someone toasted a waffle. And gave Kai a side of carrots..yep, carrots. I don’t think we ate enough carrots yesterday. No way were pancakes going to figure themselves out.  Lyle Lovett started singing about a boat, and I felt better. Kai was late to school, Kaitlyn never perked up. 

I lost track of time, and of the process of the day. Seizures took over Kaitlyn, as did the vomit. Kai wasn’t feeling well at school, and came home early. Those were organic carrots, what the heck?!

The kids and I met with a nurse who came over and is helping us by starting the process of respite care. They came over in the midst of seizures, police hot wheels on the ground and me deliriously explaining something which I can’t quite remember. We can’t win them all, tomorrow will be better. She’s starting a new medicine tonight that is supposed to help with this. Reglan… you better work! 

Also, I found frozen bread. I thaw the frozen bread loaf, wait for rising, and put it in the oven. All the steps that used to make my bread feel important are gone, but in the end.. I had bread today. Even after all that vomit talk.

Starting In the Middle: big, giant summary

To summarize what’s happening with Kaitlyn seems impossible, but since she’s what makes impossible all possible…  here goes.  I can’t promise it will be short, or that this will make any sense…

Kaitlyn was born a healthy, gorgeous, glowing baby. Her eyes caught you even if you didn’t know her. Her eyes still catch me, and anyone who stops to look at her.

Seizures started when she was 2 years old. They tried to take over, but Kaitlyn’s tenacity and strength always prevailed. In spite of seizures and the toll they took:  she learned songs, took in everything around her, smiled,  loved all things pink and pretty, and seemed to have the world wrapped around her cute, perfect finger. She loved tree frogs, pink roses, pancakes, hot chocolate in glass cups, tea parties, her family, and even an early start to crushing on specific boys.  I’d like to blame Disney for that, but it’s just who Kaitlyn is. She isn’t afraid to see the good in everything, and say what and who she likes. Kaitlyn’s love for her little brother Kai is an amazing thing to witness. Those two are so connected.

When Kaitlyn was 5, her seizures were daily, and she was falling behind in school.  But it was kindergarten.. how serious can those scores be?  (I always have “but it, but noo, but it’s ok” remark.. just so you know).  She started new meds in addition to the first ones, went through medication increases, decreases, changes, side effects, etc.  I have an appreciation for medicine that I can’t describe, but I also can hate and fear them.  No choice or decision in this process has been easy.  If , “fix her” was all I needed say, that would be great. Her neurologist advocated for her to have a VNS implant (Vagus Nerve Stimulator) and it was placed before Christmas that year. Weird how such a process can fit in one sentence really. The VNS made a HUGE difference. Kaitlyn’s seizures were less often, less intense, and the effects of them had less of an impact on her, overall. She was awake more, learned songs, talked in longer sentences which lead to hilarious Kaitlyn stories. She was the kid she deserved to be! It wasn’t perfect, seizures still came, but it was so much better.  

Kaitlyn repeated Kindergarten in Windsor when we moved- and she had seizures, but she also still thrived. 1^st grade was even better. Seizures were less, she was still behind in school- but she also improved consistently.  Windsor Schools took Kaitlyn in with so much love, understanding, compassion, ability and a collective goal-oriented way of making sure Kaitlyn was always moving forward.

2^nd grade started out pretty good. Kaitlyn’s seizures affected her work, and she often had them at school, but she had the support she needed and was consistently improving. However, then she started getting sick more often, more than just seizures. In March of that year, she had pneumonia and even though she was only hospitalized for 2 days, that illness took a lot out of her, and it took a long time for her to recover.  Her seizures were worse after that, and more often.

Kaitlyn’s pediatrician recommended we switch neurologists, to a more specialized doctor. We went to Oakland for her neurology care for a few months, and went through some medication changes. Nothing seemed to help, and Kaitlyn continued to have increased seizures, and fall behind more in school.

3^rd grade was incredibly difficult. Kaitlyn was often sick, and had even more seizures at school. Most days, I picked her up from school because of seizures, fatigue and her being sick. We never gave up on school working- and the staff helped Kaitlyn, and me the best they could. The support of the school community was amazing. Kaitlyn’s aide and teacher always checked in, even when Kaitlyn couldn’t make it to school. The principal wrote a letter to Kaitlyn’s doctors, everyone tried to help. We switched neurologists again, this time to San Francisco. That neurologist was more like our first neurologist, who Kaitlyn absolutely adored.  Kaitlyn was thoroughly examined, we spent a lot of time discussing Kaitlyn,  and she only changed one thing at a time- which was incredibly helpful in seeing what was working, what wasn’t, etc.  She’s also so easy to get a hold of, and always got back to me. Kaitlyn’s nurse case manager in SF has also made a huge difference in this process. I can get a hold of her, and she has helped direct me in so many seizure situations. She also helps coordinate Kaitlyn’s other needs. Kaitlyn’s pediatrician is her favorite doctor by far. He’s guided us through these past years and has always kept Kaitlyn’s needs at the forefront of every decision. He makes Kaitlyn laugh like no other. He looks at us as a whole, and always considers Kai and I as well. We have the best care possible, I’m sure of that. 

Unfortunately, even with the best care, Kaitlyn hasn’t gotten better- she’s actually doing worse. She lost weight, was falling even more behind, wasn’t able to attend school at all. The seizures seem to be taking over  the most amazing girl in the entire world, this Kaitlyn. It’s harder to summarize August of this year to now because we’re still in this big unknown.  

In September Kaitlyn was hospitalized after a long virus. We spent her birthday in the ER. It was again only a 2 day hospital stay, but it was hard leaving the hospital again, with her not being better.  After continuing to not get better and an increase in seizures- she was hospitalized again in SF and saw more specialists at once. She had a 24 hour EEG which showed some “slowing”, and she had nearly stopped eating all together.  Again we left the hospital without knowing what was wrong, and she wasn’t any better. We went home to start a medication change, which did help with seizures gradually, but she still wouldn’t eat. She was hospitalized again in Santa Rosa that next week and had an NG feeding tube put in. The NG feeding tube helped put calories in her, but she was miserable.  That was a 6 day hospital stay. Seizures were less, but she seemed so sick, so tired and not herself.

Once home, the seizures went back to being awful, although less often. In between seizures, Kaitlyn worked on a letter to the president, drew pictures of what it would be like with no seizures, snuggled her brother as much as possible, went through books with me, craving princess stories and “normal”. She went by ambulance one night because she had a seizure that wouldn’t stop, and had so much shaking I couldn’t physically get her in to the car. She was hospitalized again, for 4 days and we all discussed a g-tube to address that Kaitlyn still wouldn’t eat and the NG tube is miserable. The tube feedings were talked about as a long term thing, and that was hard to absorb in my head. We spent Halloween in the hospital and even though they did decorate funny pumpkins, I was missing Kai- and the sadness of being in a hospital felt bigger. Big words were thrown my way as possibilities. The biggest and ugliest one being neurodegenerative as a possibility to explain what was happening to our Kaitlyn overall. Her neurologist called and talked about many possibilities though, and that felt reassuring. The impact of Kaitlyn’s nutrition was big, and so getting her nutrition under control could help with seizures and her overall health. The hope is that through tube feedings, Kaitlyn will gain strength and want to eat again. More tests were ordered, and the unknown actually started feeling safer than the things they were testing her for.

The g-tube surgery itself went well. We were in Oakland for 3 nights, and Kaitlyn’s strength- like always, amazed us all. She hurt constantly, and she endured more than any kid should, but she did everything with a grace and strength I can’t describe. She has this look for doctors she doesn’t know. Her big dark eyes glare, and her nose turns up, but she has this little smile, too. I’ve seen it happen over and over. They start out talking with doctor words, and by the time they’re around Kaitlyn for a bit, they melt too. She gets you, it just happens.

Before the g-tube surgery we met with Dr. Rich, the pediatric gastroenterologist. He talked about what was happening, that he thought Kaitlyn sounded like she had a global motility issue that could be caused by neurological issues. All sounds vague, and I can’t describe it right, but it also sounded scary- and yet made sense with what we were seeing. During that meeting, Kaitlyn was in pain, and had a seizure about an hour before we saw him. She didn’t feel good, but she was in there, being the Kaitlyn we all love. He left the room and Kaitlyn turned to me while holding her stomach, “Let’s make a run for it!”. And she giggled. It’s hard to describe her strength, but it’s those moments that remind me she’s such a fighter. 

Kaitlyn’s had some impressive stare downs with doctors, nurses, lab techs, and receptionists that may facilitate such meetings. She also wraps everyone up in a way that makes us all connected. She makes the world make sense, and I need her more than ever. I don’t know what these next weeks, months, years bring.. but I know we’re going to fight hard for every moment to be what she deserves it to be. And for Kai too.  So, here I’ll write.