Pumpkin Patch

     Over the weekend we went to the pumpkin patch with some family friends. This is the fourth year we've gone with them, and it's nice to see how each child and family has grown over the year.  While we were waiting for them to arrive I noticed a woman I recognized and had not seen in almost three years. She was the ICU nurse that took care of Lidie when she was admitted to the hospital when she was only a week old.  As you can imagine it was one of the most difficult weeks of my life. Having Lidie be so sick and helpless at such a young age left me speechless and a bit lost. The nurse was so kind and gentle. I remember how sitting with her waiting and hoping for Lidie to improve reassured me and calmed me.  Not only did she take care of Lidie and provide excellent care to her, but she calmed my nerves and fears. At the time Amaya was three and Josh was spending all of his time taking care of her, so that I could be with Lidie. So, when I was in the hospital I was alone. 

      As soon as I recognized the nurse I was flooded with emotions; gratefulness, joy, pain. But, mostly just overwhelmingly thankful. I went up to her, introduced myself, hugged her and thru tears thanked her for all the help she had given Lidie and me. I was excited that she remembered Lidie! She asked how she was doing, and was happy to hear that she is doing great. She said I made her day, but I think it was definitely the other way around.

      Looking back at such a scary, painful time in our lives I'm reminded of just how lucky, blessed, and fortunate I am to have such a wonderful husband to help me get thru these tough times. His help, support, and calmness got me thru a seemingly impossible time. Along with the help and support of friends and family we have gotten thru many trying times.  I am thankful for all of those who have helped us in both big and small ways. And ever so grateful to the doctors and nurses who have taken such excellent care of both my girls. 

Amaya and Lidie climbed to the top of the hay castle. I love how Lidie is looking up at Amaya.

Amaya, Lidie, "cousins" Lilli, and Carter enjoying some silliness in a wagon.

Look at this flower we found. Amaya's middle name, Xochitl means flower.

Here are the girls with baby Mason. By this time next year he'll be walking around picking his own pumpkin. 

Thank you Czekaj family for a great day and your friendship!

Aimee Mullins on the word disabled

    I watched a video yesterday called Aimee Mullins: the opportunity of adversity on TED.com for the first time. It moved me to tears. I appreciate how eloquently she talks about the power of words and how we label others. If you haven't seen it I highly recommend it. She talks about the word disabled, and how we label and view people who are disabled. Personally I like her definition of disabled a lot more.
     I had never heard of Aimee until yesterday. She is an athlete, actress, model and double amputee. She was born with  fibular hemimelia (she was missing her fibula bones) as a result both legs were amputated below the knee. The video is about twenty minutes long, but well worth your time. I hope you enjoy it as much as I did.
You can view it at http://www.ted.com/talks/aimee_mullins_the_opportunity_of_adversity.html

Reality setting in

     Although we've had Amaya's surgery set for quite some time now, it still feels a bit unreal. Perhaps because when we set it, it was so far away. In June we scheduled her next surgery; the lengthening procedure. October was the first date available, it would have been her first off-track session, and "good timing." But something about it felt too rushed. Just thinking of it made us anxious and nervous. And that's not how we wanted to feel heading into such a big procedure. Especially one that would take so long (ten months). Since there was no rush to do the procedure we decided to schedule it for next March, during her next off-track session. At the time it was ten months away and felt so far. The distance of it, was comforting and made it seem somewhat more bearable. Ten months seemed like a good enough time to transition and prepare for it. This would give Amaya enough time to adjust to her new school, and all of us time to adjust to new schedules and routines.
     Last week we received a referral from Amaya's primary doctor to set up a follow-up appointment with Dr. Nelson (Amaya's orthopedic surgeon at Loma Linda Children's hospital) and get x-rays taken. I must admit that while I was opening the letter I felt some tension rise up inside of me, maybe it's just a reflex now. I instantly remembered all those early x-rays that were so traumatic for Amaya and us. Where she would scream, cry and wiggle around. Her doctor at the time would end up taping her down to the table while three of us tried to hold her down. All the while she would cry out and beg "please, mom, please, help me. Please, stop." Oh it was awful, just awful. Seeing that referral reminded me of those painful early appointments we endured.  My eyes teared up at those early memories.
     It took me a few hours to call in and schedule the appointments. Which of course took three days to get scheduled (for referrals to be sent to the correct offices, etc.). We'll be seeing Dr. Nelson on November 17. At this time he'll have some x-rays taken and he'll get all the measurements he needs to plan and prepare for the lengthening surgery. He'll also be able to get a good look at Amaya's hip and decide what to do to correct it. These are the first x-rays she's had in a couple of years, so I'm curious to see what her hip looks like now.  We've never gotten a good assessment of what needs to be corrected in her hip. If you remember she was suppose to have the super hip and super knee surgery done in January, but Dr. Nelson decided the night before that she only needed the super knee. He did say that he would correct the hip when he did her lengthening surgery.  We're not sure what exactly she needs done to the hip or how he plans to correct it.
     So, I'm excited to get some answers, but feeling some anxiety and nervousness because of how quickly time is passing. We're down to five months left, which may seem like a lot of time, but I know it will pass quickly too. I am so glad that we decided to wait until March and didn't try to do it in October (it would have been in two weeks, on the 25th).  This extra time has proved to be quite helpful to prepare Amaya. She's had lots of questions, concerns and fears. And even though we've made a lot of progress in preparing her she still has so many unanswered questions, like we do. She asked her Dad last week if she we would have "a robot leg" and asked me if her fixator would come off like her brace did.  She still doesn't quite understand everything, which is normal. Some of the adults in her life still don't understand it either. That's why I'm so thankful for these next five months, where we can continue to reassure her, comfort her, show her other kids pictures and blogs and answer her questions.
     I'll make sure to post after we meet with Dr. Nelson in November. Until then keep sending calm thoughts our way; we continue to need them.

Blogs

     After my last talk with Amaya (see previous post) she asked if she could look at other kids blogs. I found several for us to look at together. Some of children, some adults, some are younger than her, some older, some more severe, some not. But each has a common journey. We looked at each blog and gained inspiration, comfort, and friends. Amaya would look on with great compassion and empathy for each child. She asked how many surgeries they had had, how old they were, what else they would need to do. It was nice to see her worries be eased, questions answered and to see others just like her.
     I am so thankful to the parents who create and update their blogs. They have given me helpful information, hope, comforted me, and guideded me. I frequently read and reread these blogs. They make this journey a little bit easier, by giving me the comfort and support that only someone who truly knows what your going thru can give. So again I say, thank you. Thank you for your time, your honesty, your advice, and your willingness to help. I can only hope that my blog does the same for someone else. It certainly serves as a therapeutic release for me, so thank you for reading these thoughts, vents, rants and words.

At bedtime the other night

     As I laid In bed rubbing Amaya's leg and singing, I started to rub her other leg. She asked me "Mom, why are you rubbing my right leg?" "Because I love both your legs," I said. "Can you rub my left leg instead?" "Sure" I said, "Why?" She answered with "because it's my short leg and needs lots of love." "Of course" I said and continued to rub her leg. A few minutes later she sat up and said "Mom, I don't think I'm ready for my next surgery. I think we need to wait until November,19. I'll be ready by then. Or maybe when I'm six and a half, definitely by then." I reminded her that it's okay to be scared. But, inside I'm sad to know that she worries about this so often. I wish I can take her cares and worries away, but I can't. I can't even take my own away.
     After a few minutes of comforting her, she said "Mom I'm so lucky, I only have to have two surgeries." I'm glad that even though she is dealing with her own fears, she is able to keep some perspective and remember that she is not the only one dealing with this. And her empathy for other kids is heartwarming.
     I reassured her that her surgery won't happen until she's six and a half, that she can do this, she will be okay, and we will be here to help her. She started to list all the people that would help her; her parents, family, friends, doctor, teacher, classmates and dance teacher. I'm so thankful for all these people whom she can count on, thank you all.

Ballet

     Today was Amaya's second ballet class. After the first class her teacher pulled me aside to talk. She showed me how she taught Amaya to stand. She had her shift her hips forward so that her hips would be level. When she's in ballet shoes, without a lift, her left leg is shorter than her right one and doesn't touch the floor in the same way as the other. That's the same issue we have when she tries to wear any other slip on shoes. That's why I always push for her to be in her shoes with a lift. Her teacher's suggestion would help keep her hips and back aligned while she's in her ballet shoes or any other flat shoes.
      I was touched by her teachers kindness and willingness to help. I appreciate how she acknowledged it and dealt with it in a tactful, kind and professional way. It's been nice to see Amaya meet new girls who live in our area, to try something new, and to push herself. During ballet Amaya does a lot of exercises, stretches and balance work that is similar to what she did during physical therapy. She's also going to be performing in the Nutcracker this year as a gingerbread. In a few weeks, in addition to her weekly class, she'll also have a weekly practice. Although it'll be busy for a couple of months it's a nice distraction before the surgery. And this will be one more thing that she CAN do. It's so important for me that she and others believe that she CAN do anything.

Bedtime routine

     Over the last couple of weeks we've made a minor adjustment to our bedtime routine. I usually lay next to Amaya and rub her head and sing until she falls asleep. A few weeks ago Amaya asked if instead of rubbing her head if I would rub her left leg and scars. I was kind of surprised when she asked me to do it. I wondered "do I not rub it often? Or enough?" I rubbed it and have been ever since. I try to not only rub it at bedtime, but also during the day. It's such a sweet little leg.
     As I rub it I realize that sometimes I've been a bit hesitant to rub it. I was afraid to hurt it or make it uncomfortable for her. Her leg was sore after her surgery in January and I tried to not bother it. It's so nice to be able to rub it. I try to take advantage of every chance I get to rub her leg, because I realize that my time to do so is limited. In about six months she'll have her lengthening surgery and have a fixator on for ten months. I'm not sure if I'll be able to rub it during that time. So I'm going to take advantage of it while I can.
     Speaking of scars, I'm always amazed at how big her scars are. She has one on her upper thigh that's about four inches long and then one that starts above the knee goes over it and makes an "s" shape. That one is about eight inches long (these are from the super knee procedure she had done in January). They look so big on her leg, (she's only about four feet tall). I'm amazed at what she's endured, overcome and survived. She's amazing.
     Another great addition to our bedtime routine; after we say "I love you" she responds with "and you love my little leg." "I do, very much," I say. Then I just smile and hold in my tears.