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**I am not a medical professional and the information on this blog is not to be construed as medical advice of any kind. ALWAYS consult with your child's doctor before making any kind of changes to his/her treatment, feeding schedule, etc.**

Sunday, July 26, 2015

We made it, babe!

Dear Raya,

It's late and I should be in bed. We have a big day tomorrow! I know every mom says this, but I really can't believe you're starting kindergarten tomorrow. I would say that I don't know where the time has gone, but I know exactly where it has gone. Time flies by when you're working hard, and we have been working HARD for 5 years, 8 months, and 16 days now.

When I first laid eyes on you, I could have never imagined what our journey together from birth to kindergarten would look like. To be honest, it was not at all what I wanted for you. I wish you had never been subjected to half a dozen needle pokes in the middle of the night on multiple occasions. I wish that no NG tube had ever rubbed against the tender tissue inside of your nose and no tape had ever made your soft little cheeks bleed. I wish that your first word had not been "blood pressure" and that you hadn't uttered your first word within the walls of a children's hospital.

 I wish that you had never swallowed a drop of barium. I wish that you had been able to spend your time at dance class or gymnastics instead of therapies. I wish that you hadn't spent the first 18 months of your life repulsed by the idea of eating food. I wish you had never experienced emergence delirium waking up from anesthesia. Or anesthesia, for that matter. I wish that we didn't have several souvenir photographs of the inside of your esophagus and stomach. I wish there wasn't a hole in your belly.

I wish your body and brain communicated better so that things didn't have to be so hard on you. I wish you hadn't been in isolation on your first Halloween. I wish you didn't have to be so brave. I wish your vocabulary didn't include medical terminology. I wish your skin had never been burned by your own digestive fluids. I wish you had never had to see a specialist (or 6). I wish food wasn't your enemy and you didn't need to carry EpiPens and Benadryl. Or any other medications. I wish you hadn't had to learn to walk with a feeding pump backpack on your back, even if it was ridiculously adorable.
I wish sending you to school was as easy as buying your school supplies and dropping you off like all of your friends. I wish you didn't have to worry about what might happen if someone accidentally sees your pull-ups at school or if you don't make it to the bathroom in time. I wish you could just be a carefree little kid.

I would not change any of it. (okay, maybe a little bit) Every needle poke, every NG tube placement, every anesthesia, every hour of therapy, every x-ray, every endoscopy, every G tube insertion, every traumatic GJ tube change, every vomit, every doctor appointment, every hour spent in waiting rooms, every night spent in a hospital bed, every meltdown, every test, every procedure, and every bit of pain, fear, frustration, and sadness has shaped you into the incredible little kid that you are. You have never stopped amazing me with everything you do. Every time your therapists ask you if you're done and you say you want to do one more or take one more bite, you show me your determined spirit. Every time you write your name and your letters are a little bit neater, you show me that you are capable of working at something until you get it right. Every time you take a taste of a food that I know you would rather vomit than eat, you show me that you trust the adults who are trying to help you overcome your challenges. 

Tonight as we were preparing your "all about me" bag, you chose 3 things to put in your bag that will teach your classmates about who you are. One was the family picture from last year's Christmas card. Another was your little Beanie Baby cow, because you have a LOT of those little stuffed animals and you carry at least half a dozen with you most of the time. The third thing you put in your bag was your "I ♥ a Tubie" shirt. When I asked you what you would tell your friends in your class about it, you said, "I'm gonna tell them about my tube." I asked you what you would say about your tube, and you matter-of-factly replied, "I'll tell them that it feeds me because I have trouble eating." Your answer was simple but sufficient, and my heart melted, as it does every time I hear you explain your G tube in your own words. It's adorable and it makes me so proud to hear you find your voice and speak up for yourself.

I have so many hopes for you this year, Raya. I hope that you LOVE kindergarten. I hope that you love learning, and that you will be humble enough to let your teacher teach you. I hope that you will be a good friend, and that you will love your classmates and be loved by them. I hope you will be a hard worker, even when you are asked to do things you don't want to do. I hope that you will find a good routine and that it will lead to you developing the age-appropriate self-care skills that have been so hard for you to catch up on. I hope that you will learn to handle disappointment in a constructive way. I hope that you will continue to develop a sense of ownership over your body and your health, and that you will conquer your fear of putting your own G tube in. I hope that you will be kind, but that you will also be assertive when you need to be. I hope that you can find the words to express how you are feeling and what your body needs to those who are responsible for your care at school. I hope you will be safe. I hope you never have to use the emergency supplies in the health office and that your pump bag never breaks at school. I hope you will get used to wearing your uniforms soon so that you don't keep getting upset that your uniform skirts don't move right, like your regular skirts do. Most of all, I hope that you will someday be able to comprehend how proud I am of you for working so incredibly hard to overcome so many challenges and be ready to go to kindergarten. 

It is really hard for me to turn your care over to someone else because I have spent the last 5 years, 8 months, and 16 days completely devoted to keeping you alive and healthy and I know how hard that job has been. It's hard to place that trust in someone else, especially when we haven't met her yet. There is a part of me that is sad, just like when your older siblings started kindergarten. I was sad for me because my babies are growing up, but I am so excited for you to start this stage of your life. You are READY to go to kindergarten! You keep telling me that you miss preschool; that you miss your teachers and your friends and mostly the toys, but preschool was not enough for you anymore. You outgrew preschool and now it's time for you to grow into elementary school. I love you so much and I can't wait for you to tell me all about your first day of school! You will do great things, my darling!
Mommy ♥

Wednesday, July 22, 2015

Back-to-school time again!

No, that title is not a mistake. We really are starting back to school next week. In July. Ack. I haven't even finished writing about our trip to Idaho at the beginning of July! The last week or two have been a bit rough though, and while I love my children dearly and I know I will miss them when they go to school, they have been making it SO HARD for me to be sad about school starting. So. Much. Bickering! They had such a great time while we were visiting family in a cooler climate where they could spend all day outside every day that coming home where it's too hot to do anything outside and we don't have a great big farm to roam around on was a huge downer for them. They've been bored so they've been doing what all siblings do when they get board: bug each other.

While I was driving them around from place to place today in an attempt to cram as much end-of-summer-vacation fun into our week as we can, I kept catching myself thinking about the things Piper and I can do while the older kids are at school. Piper usually took a nap while Raya was at preschool so we didn't really go places or do much of anything. Today while the kids and I were at the neighborhood pool, I thought to myself, maybe Piper and I will come to the pool by ourselves next week while the kids are at school. Then I felt a little twinge of guilt at how excited that thought made me.

After we went swimming, I took them to one of the schools in the area that serves free lunch during summer break and then we went to the library. Piper was exhausted by then and fell asleep in her stroller, so I found a book that caught my fancy, sat down in a comfortable chair in a quiet corner of the library, and read while Piper took a nap and the other kids played and looked at books. I caught myself thinking, Piper and I can come to the library for story time while the kids were at school! Then I felt a little twinge of guilt and sadness that I never got to do that with Kaida and Raya. We always had therapy appointments during story time hours. Or else I was so tired of dragging them to medical appointments that I couldn't bring myself to drag them to story time at the library too.

Thinking about that got me thinking about how I used to take Cole and Ashtyn to fun, cute little sports and dance classes at the parks & rec department when they were little. They loved those classes and I loved watching them have fun! This was from one of Ashtyn's classes. Kaida was only about 5 weeks old when Ashtyn had her performance for this class:
2007. Life was SOOOOOOO different in 2007.
Thinking about how much fun Ashtyn & Cole had in those parks & rec classes, and the prospect of being able to sign Piper up for them made me happy. Then it gave me a little twinge of guilt and sadness that Kaida and Raya never got to do any of them. I was maxed out and just couldn't add one more commitment and one more place to go. I know it's an excuse, but it is what it is.

The theme of my day was a little internal roller coaster of feeling happy and excited, followed by feeling guilt and sadness, followed by reminding myself that I have nothing to feel guilty about (although it's perfectly reasonable for me to be sad about the things that made me sad), followed by more excitement about what it will mean to have ONE kid at home again while the others are in school full time (and almost full time). It means that for a few hours every day, I will get to focus on something other than Raya. I don't mean that the way it probably sounds. What I mean is that since the day she was born, my life has pretty much revolved around her health. Not just my life, but our whole family. Our schedule has been dictated to varying degrees by her medical needs, her sensory needs, her appointments, her therapies, and whether or not I felt like venturing out with her in whatever mood or mental state she happened to be in at any given time. I feel like we've done the best we could to maintain "normal" for everybody, but the fact remains that there are things we had to give up for the greater good of focusing on Raya's medical state and development. Am I resentful about any of that? No. Am I bitter? No. Am I sad that Raya and Kaida didn't get to do some of the things Ashtyn & Cole got to do as toddlers & preschoolers? Yes. Am I excited about the prospect of going back to doing some "normal" mom stuff after spending the last 5 years and 7 months going to therapy appointments? Heck yes! Raya and I have gotten a huge amount of bonding time, albeit in the form of doctor & therapy appointments and hospital stays. Ashtyn and Cole and I did a lot of things when they were little. Kaida and I got to have a lot of one-on-one time when we started using respite care for Raya. Piper and Kaida both have been dragged along to countless appointments but that was never fun, so yes, I am really looking forward to spending some one-on-one bonding time with Piper while the big kids are at school. Even if it means having to spend a lot of time talking myself out of the ever-present mommy guilt over circumstances where I did my best to handle what life was throwing at me.

Sunday, July 19, 2015

Summer Travels

We spent the first 9 days of July traveling. We live about 1,000 miles away from my family and had not been back to visit them for 3 years, so it was a well overdue visit. Road trips are SO not my favorite. I really REALLY don't care for long road trips, but sometimes you just gotta do what you gotta do. Driving costs a fraction of what it would cost to fly and rent a car when we got there, and we also got to stay overnight with my grandparents on the way there and back, so it was well worth the drive. We decided to rent a minivan to make the trip so that we didn't put the wear & tear on our own vehicle, and it was a great way to go. We have an SUV, so the kids think vans are really cool.

I do not like road trips. Really. When it comes to vacations, I'm not the "enjoy-the-journey" type. I'm the "let's-hurry-up-and-get-there" type. Unfortunately, one can only hurry up so fast when driving from Arizona to Idaho. Thankfully, it was a very uneventful trip, and I mean that in a good way. The only problems we had were that I underestimated the volume of pee that the 2 diapered children would be voiding between some of the stopping points, which resulted in some unanticipated clothing changes. There was also the time that Raya accidentally yanked her G tube out when she was getting out of the van when we stopped for lunch.
We were all hungry and had to go potty, so rather than move things out of the way so I could lay her down and put it back in the way we normally do, I just deflated the balloon, lubed it up, and popped that puppy right back in her stomach. Bam. Tubie momma level-up for me. I also got bonus points for my super-efficient packing job and having the emergency kit easily accessible. (kinda proud of myself...) I think it was a level-up for Raya too. I know that putting a G tube back in while standing in the parking lot of Jack-in-the-Box in Page, Arizona was not on either of our summer bucket lists but we got 'er done. :) Once the tube was back in place, we had lunch and got back on the road.

After 12.5 hours in the car, we finally made it to my grandparents' house. The kids were SO excited to be there, and SO excited to be out of the car!

Grandma had dinner waiting for us when we got there, so we ate dinner and then the kids went outside to enjoy the beautiful weather in the big, beautiful back yard. Grandpa is quite the gardener, and the kids couldn't wait to see what was growing in his garden.

I suppose it was a little bit mean of me to stand Piper up in the grass like that. She hadn't really ever been on grass before. She was fine at first but then she wanted off, but couldn't walk on that surface so she had to crawl off of the grass instead. She wasn't very happy with me about that. She LOVED crawling around on the concrete driveway though. She crawled around so much that she made her knees sore but even so, she was happy as could be.

Cole found some slugs in the pea patch that Grandpa didn't know were there.

Grandpa turned 91 in June and his mobility is finally to a point where he consented to getting a little scooter to help him get around. I'm not sure that it is intended for the off-roading he's been doing with it but it makes it a lot easier for him to get out to his garden.

He helped Raya find a pea pod to pick and then showed her how to open it to get the peas out.
She was not interested in eating it like he suggested, but she thought it was pretty neat.

After spending the entire day in the car, a beautiful Utah summer evening was exactly what we all needed. The kids did a karate demonstration for their great-grandparents and Grandpa took the kids for rides on his scooter. We played outside until the sun went down.

When it got dark, we headed inside and got the kids into their pajamas. Raya climbed up onto Grandpa's lap and decided it would be funny to put his glasses on. She is such a funny kid!

The older girls have been taking piano lessons for almost a year now so they decided to play their songs for Grandma. I grew up listening to Grandma play the piano, and I don't think there is another piano anywhere that I love as much as Grandma's piano. As cheesy as it may sound, seeing and hearing my girls play Grandma's piano touched my heart. They loved playing for her and she loved hearing them play.

We sent the kidlets off to bed and decided to let everyone sleep until they were ready to get up and then stay until lunchtime before heading off on the next leg of our trip. We wanted to spend as much time as we could with Grandma & Grandpa since we hadn't seen them in so long.

The kids decided to play outside in the cool morning air after breakfast.

I went outside to get something out of the car and found Raya like this:
When I asked her why she had her blanket outside she said, "I was cold so I have to wear my blanket dress." Always the poser!

We had lunch before we loaded everybody into the car. We hadn't been able to convince Raya to eat anything the day before. Traveling was hard on her body and she just didn't feel like eating. On Thursday, the corn from Great-Grandpa's garden was too tempting for her and she decided she felt good enough to eat some.

Great-Grandma fed Piper some lunch too. This is the great-grandma that she's named after, so it was special for them to meet each other, and I was really glad that Piper was friendly to her. She's finally starting to get past her stranger danger phase a little bit. Giving her food is usually a pretty sure way to make friends with her too.
Piper made herself right at home

We had a few more hugs and kisses, and some more antics from Raya, and then we headed off to Idaho.

Being at Grandma & Grandpa's house was a breath of fresh air for me. It is and always has been my place of refuge. There is no love like that of a grandparent (or great-grandparent!) and being there was like medicine for my soul. I hear so many stories from my friends whose kids have special needs or medical concerns like food allergies, of family members not being kind and accepting of those issues. Going to Grandma's house couldn't be further from that. While we were en route to Utah, Grandma called my mom and asked her what foods Raya could eat. Then she made a special trip to the grocery store to buy margarine, and she came home and baked a bunch of potatoes (even though it heated her kitchen up to about 90 degrees) so that when we got there, she would have something that Raya could eat. She made sure not to put regular dairy butter into the bowl of corn so that if Raya wanted corn, she could have some. I noticed when I put some things in the freezer that she had a bag of rice flour and a couple packages of gluten-free things in the freezer. One of my cousins and a couple of his kids have celiac disease, so she has those things in the freezer in case they come to visit. THAT is what family is supposed to be like. Unconditional love and support. We are used to taking care of ourselves, especially when it comes to our family's dietary restrictions. It's not a big deal to us. We are used to bringing what we need and Raya is used to not eating what everybody else eats most of the time. Having someone go to the trouble of preparing food that she can eat with everyone else is a small gesture that means the world to us. The kids adore their great-grandparents, and the adoration is mutual. They all had their love tanks filled. The whole time we were there, I kept overhearing the sweet comments Grandma and Grandpa would make to each of them. They told the girls how beautiful and smart and cute they are, and Cole how handsome and strong and wonderful he is. Each of them heard over and over again how special they are. They are so blessed to be old enough to make memories with their great-grandparents!
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