Here We Are

Eeeek, I did it again. I wait until our update is 18 miles long before I sit here and write it out. We’ve been a busy crew, and thankfully not the hospital kind of busy.

The most important update: Kaitlyn is GAINING weight! She’s still on both TPN and formula, and while it’s not the most comfortable experience, she’s consistently tolerating everything better than she had been before. Her seizures come less often. When they do come, her stomach issues become worse, but it’s a ‘temporary worse’, and in a day or sometimes two or three, she recovers. We go to Kaiser weekly for labs and weight checks. Her blood-work is showing improvement too. The lipids in the TPN were making her especially itchy and once they took the lipids out, her blood tests improved and her itching went away.  She lost weight though, so after a few weeks, they've added the lipids back, but only for 3 days a week. She's most uncomfortable on the lipid days, but she's also improving.

Kaitlyn's Sleeping Beauty kind of sleepiness comes in waves. After an awful seizure, she’ll be sleepy for a few days sometimes. By ‘sleepy’, she can literally sleep nearly 20 hours each 24 hour period during that phase. Those days, I feel lost and we miss her more than I can put into words. There are moments on especially rough days, where my perspective won’t let me see past the raw heartache in missing her and seeing her hurt. I feel helpless and it can be hard to find the hopeful or to be insightful. I don’t’ think I’ll ever get ‘used’ to seeing her have seizures. Then when she feels good, is awake and talking to me- I forget instantly how awful things were before, and we soak up every minute of a happy Kaitlyn. Most days are good, and I have to remind myself of that on the hardest ones.  If ever there’s a lesson on how to appreciate the good and be thankful in and for each moment, Kaitlyn is it.

“Could you call EMS or maybe the SWAT team, just in case; so they can protect you and Kaitlyn while the EMT’s fix her? They could fix her if we call them.” says our sweet, wide-eyed Kai after watching Kaitlyn endure a seizure this morning.  Sometimes I don’t know what’s worse- watching Kaitlyn have a seizure-or seeing Kai, watch Kaitlyn have a seizure. 

No matter how unreasonable it may seem, there’s a feeling of guilt that sits in each day. Its relevance in the day changes.  Some days it takes over, some days thankfully-it doesn’t.   It’s a kind of self torture I don’t know how to stop.  As Kaitlyn’s mom, I should be able to do more. Feeling helpless is hard all on its own. Feeling guilty can sound or seem fruitless, but it can take over regardless. I feel guilty when I miss a seizure, guilty when I call for help, guilty when I don’t call for help. Guilty I don’t write everything down anymore. Guilty I haven’t figured out enough.  I’ve felt guilty that I didn’t react soon enough with emergency medicine, and sometimes feel guilty that I’m overreacting. Maybe I don’t see what I see, or I don’t see enough- there’s no way to know if I’m ‘doing’ this right.  This is one of the reasons the experience with the doctor in Oakland took over. She seemed to validate all the things I felt were my fault.  In these last few months, I’ve still struggled with what she said, even though I’d love to say I’m over what she said.  We can’t go back to any of the conversations we’ve had in the past. So why I sat (okay fine, still sit) for so many hours on so many different days wishing I could, I’m not sure.  I’m embarrassed that it’s taking me so long to recover from that.  I’ve also felt ashamed in how I’ve focused on what went wrong, when a lot went right after that experience. There’s a balance somewhere in this, where I’m incredibly thankful, grateful, inspired; and yet also completely offended, insulted and run over. Being bulldozed isn’t comforting at all, yet being comforted doesn’t always inspire us enough to change.  There have been many moments in my life when something awful inspired me to grow. Oakland is among that list now. I grew, I’m a better mother because of that experience, and I never want to go through an experience like Oakland ever again.  Knowing what we don’t have to tolerate has helped me as a person, not just exclusively as a mother.

During one of Kaitlyn’s first cluster of seizures after coming home from Oakland, I took too long to respond or even recognize it as a seizure at first. I doubted myself too much. I doubted what I saw right in front of me. I wasn’t going to be a good advocate for Kaitlyn if I stayed in that mode for long.

One thing I’ve learned repeatedly is that we don’t have to wait for Kaitlyn to get better to start living our lives.  That applies to so many things, for me personally and in how I plan our days as a family. We can do better and live each day to its fullest, with where we are at, exactly as we are, right now. Realizing that has helped me venture out of my comfort zone, both independently and with my kids. Clearly, I have a long ways to go, but I’ve finally made significant steps in that direction.  

 We were able to attend part of Windsor’s Relay for Life to honor our amazing cousin, Stephanie.  Stephanie is fighting and surviving stage 4 liver cancer. She fights daily for what so many of us take for granted. She inspires me as a mom, she’s incredibly uplifting and has a positive attitude like no one else I know. For the past 3 summers, Relay for Life has been an event we get to honor Stephanie, come together and feel like we are fighting with her. This year was different for us, but I didn't want to miss it. Even though we didn't get to participate like in the past, it still meant a lot to me to at least show up.  We waited until the weather cooled down and went in the evening. Then I attached the TPN bag, pump, and tubing to Kaitlyn’s stroller and it worked. I adjusted her formula time at home so she had a formula break while we were there.  Kaitlyn slept through the time we were there, but it felt so good to be surrounded by the group of friends I’ve missed so much in this past year. While Kaitlyn did sleep during relay, her active awake time in the weeks before the event was a HUGE part of us getting ready. Kaitlyn made purple pictures one night, one after another. Kaitlyn's love for Stephanie is evident just in saying Stephanie in front of Kaitlyn. She smiles big right away. Stephanie’s circle is an amazing group to sit with. I know I'm a giant cheese ball trying describing it all, but Relay for Life meant sooooo much to me seeing the group of friends I've missed so much.

I also started going to Search and Rescue meetings and events again. Finding my place in everything I used to be isn't easy, but it's re-definable and that's entirely hopeful.  We are lucky to have nursing care available for Kaitlyn so I can have breaks. Initially, it felt selfish- and now it feels refreshing and less selfish.  I registered for a class (EMT), which starts in two weeks. It’s full, and I’m on the waiting list so while there’s a chance I won’t get in, there’s a bigger chance I will. I'm nervous, excited, worried and can't wait-all at once. Kai was so excited; he gave me his hot wheel EMT truck, which I now carry with me. I got my hair cut- not sure how that’s an accomplishment, but it is somehow. I started baking again-which is like therapy, but a lot more fun. We’ve left our house more, not just during the limited hours Kaitlyn gets tube-free, but even with feedings on. It took a while to figure out doing that, but we did.  Not much can stop us now, and that’s what I want both my children to know to be true.  

I've spent time with friends, out in public more than once in the past 3 months. (I'm not short, they're just exceptionally tall). A good friend also came to see me, and we laughed about life, had girl talk which I thought I had forgotten how to, and ate junk food.

The kids and I started going on evening walks. Kai loves to push Kaitlyn in the stroller, and is constantly asking to help. I love our walks, and the conversations we are able to have. Kaitlyn is usually asleep, but when she’s up, she loves our walks too (and sometimes she growls at us, not happy with the walks).  Kai walked right through a pair of shoes. Exercise isn’t something I’ve mastered in this, but am slowly finding my way. I started running which sounds a lot cooler than it is in real life. I run in circles, not just metaphorically. In fact, we are now challenging that metaphor. Running in circles CAN get us somewhere. I set my timer for 5 minutes to begin with, and ran in my house. I have Kaitlyn on the video monitor so I felt like it was a safe, effective thing to do. Granted, I look ridiculous. Now I go for 45 minutes, and feel a lot better. Kai “trains” me in the back yard. He says he’d like a flare gun, but I’m thankful he doesn’t have one.  I attempted yoga, but upon Kai’s public imitation of me doing that, I’ve realized I’m no yogi. 

Last week, we went to the beach for two nights. While on Expedia making up pretend vacations (a weird hobby, I admit), I found where we could stay and we made it happen. Our beach trip wasn’t perfect, seizures and their effects followed, our schedule was off. Yet we made it, we had non-medical time away from home. We walked along a paved ‘Coast Trail’. Kai and I took turns pushing Kaitlyn. Kaitlyn slept most of it, but when she woke up, she loved the fresh air, the hotel and the sound of the ocean. At 2 am the first night, she woke up and said she was so “happy and lucky to be here at the real beach”. She drew a beautiful picture of the ocean. She makes a lot of pictures of the beach, and now that we saw it, the detail in her art has grown. The mini vacation was great for Kai too. We got to talk more, with no home distractions. He told me as many police scenarios as he could think up and I learned that ‘phone a friend’  and ‘eat chocolate’ weren’t  good enough answers to any scenario. 

The day we drove home, Kaitlyn was really off. It was the beginning of a rough cycle she just came out of.  We made it through though, and I’m so grateful for the break we took. I handled/managed the week better because we took time away together.  Creating good memories turns out to be incredibly good medicine, and the best way to fight for relatively normal.