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.

Sarah Reinertsen

     I just finished reading In a Single Bound: Losing my leg, finding myself, and training for life by Sarah Reinertsen. I had never heard of Sarah until a few weeks ago when someone posted a you tube video of her on the PFFD facebook page. The video moved me to tears. If you haven't seen it I highly recommend it.  It's only a few minutes long, but very inspirational. I googled her name and found her website and her book, which I ordered that same day and read in about a weeks time.  Sarah is an athlete who regularly competes in marathons, bicycle races, and triathlons. She was born with PFFD and had her leg amputated at age seven.  It's a great read especially for a person or parent of someone with PFFD. It was nice to read her perspective as she grew up with and dealt with PFFD, and an amputation.  I appreciated her honesty and her spunky/feisty spirit.  She's a great role model for me, and my daughters.
    Another thing I found were the Sarahbears that she created. It is a teddy bear with an amputated leg, and it wears a prosthetic. How great is that?  I'm sure it would be a great comfort to a child who also has had an amputation or wears a prosthetic. I'd like one for my girls, because it's important to build tolerance and acceptance at a young age.
     It's funny even though I've finished the book, I just can't seem to put it on a shelf quite yet. It's still sitting on our coffee table, as a visual reminder. I like seeing it on a regular basis, reminding me of Sarah's courage, honesty, determination, and strength.

Today was kind of a rough day

     Well today was kind of a rough day. As we were getting ready to go Amaya was stalling and not putting her shoes on. After a few reminders she finally went over, grabbed her shoes, put on the right one then began to cry. She quickly became overcome with emotion and tears. She let out some of her feelings, frustrations and fears. Some for the very first time.
     She began crying and fell to the floor in a fetal position and rocked. I watched her and tried so hard to keep it together(this took every ounce of self control and strength that I had). She began to say ..."I don't want to wear a lift. I'm never wearing one again. I just want two flat shoes. Lots of shoes, like everybody else. I don't want a shorter leg. I don't like having a shorter leg. Why do I have to have one? I just want to be like everybody else! I'm scared to have another surgery. I don't want another surgery, one was enough. Why can't I just have one?" I sat next to her, cried with her,listened, and rubber her leg. I began to explain to her that nobody is "just like everybody else," we all have things that make us unique. I explained that even though wearing a lift can be a pain, so is a retainer, or glasses, or hearing aide or being in a wheelchair. I reminded her that other people struggle with other stuff that they don't necessarily enjoy doing. I also reminded her that it could be so much worse. Not only could she have another more serious disease, but her PFFD could be more severe(she has one of the mildest cases). I let her know that other kids with PFFD have also had to go thru what she's going thru, that some have had more surgeries, many more. And that in the scheme of things two isn't really all that bad. I told her how the first surgeon we met with when she was only a few months old recommended four surgeries and that we were so lucky to have Dr. Nelson who could correct it in two. I also told her that it was okay to be frustrated, and upset and not want a shorter leg(this seemed to allow her to relax, almost like it gave her permission to be feeling what she was feeling). I admitted that I didn't want her to have a short leg (even though I love and accept her just as she is), or to have to deal with any of this. I reminded her that she isn't in this alone. Josh, Lidie and I are here to help her every day for the rest of her life. We're going to help her get thru this surgery and every other challenge that comes her way (she smiled).
     During all of this, Lidie sat so sweetly next to Amaya, rubbing her back and singing Born This Way. I'm amazed by the empathy and compassion of my two and a half year old.
     After a few minutes Amaya said, "You're right mom, two surgeries are better than four. I'll have my other surgery. I love you mom." This was followed by a hug then she calmly put her shoes on and was ready to go. Just as quickly as it came, it was done.
      I felt so sad and helpless. It was so hard to see her this way. She's never once said that she didn't like her leg or that was shorter. She's never once questioned why she had PFFD. Maybe its because as she gets older she's able to think on a different level, or wonder, or maybe she's more aware of the world around her. I just don't know. I can't imagine what her little almost six year old mind must think and feel. Today I got a glimpse of it. I was so glad that she was able to let it out and not hold it all in. I'm amazed by her ability to speak so honestly and to clearly express what she felt and thought.
     I was so glad that after her venting was over she was able to accept things and move forward. She's just amazing.
     I don't think others realize that when people(and their families) have a disability, it's something that they deal with on a daily basis. It's hard, all we can do is offer love, help and support.

Summer Claus

     This morning we got up early, got dressed quickly and headed out the door by eight twenty so we could make the forty minute drive down to the Loma Linda Children's Hospital in Loma Linda.  This was a fun visit, no surgeries, no IVs, no over night stays, nothing.  It was the fourth annual Sons of American Legion Christmas in July Motorcycle and Car Show.  The girls were so excited that Santa would be coming to the children's hospital. I was glad to have time there that wasn't scary for the girls.
     As we waited we ran into some old neighbors. Both their boys were born with a heart defect and both had their  surgeries at Loma Linda.  Both boys looked happy and healthy and had recovered well. Aside from yearly check-up's they've recovered and moved on.  In some ways I envied them; I wish that Amaya's birth defect (did I mention that I hate calling it that. Even though I know that, that is what it is. A random birth defect. I still don't care for the term) was something to quickly correct and then move on from. I know that her condition is something that has and will affect her for quite sometime. I know it's not devastating, or debilitating, but I wish I could spare her from it all.  But, as I sat stood there with these thoughts, I noticed the other families. I saw other children who had other, more severe illnesses, defects. Each child, and family has their own struggle.  So I accepted ours for what it is; grateful that it isn't worse.
    We waited patiently for Santa to be brought in on the back off a pick-up truck filled with toys. He was led in, not by reindeer, but by several motorcycles. When we heard the roar from about a block away we were all excited.  He was in his "summer gear;" a red hat, shorts, sandals and a red Hawaiian shirt.
    As I watched Santa pull up, the motorcycles park, the classic cars park (some had hydraulics and "danced" and "hoped"). I was overcome with emotion and deeply touched by the kindness and generosity of strangers. None of these people knew Amaya or any of the other patients, yet they gave up their Sunday morning, shared their cars and donated gifts.  I hope they know how much they brightened the day for so many kids and their families.
     Both girls chose Barbie's and were so excited to have them opened up right away. Amaya and Lidie both went back and thanked Santa again for their gifts.  Josh also made it a point to thank one of the women who helped coordinate the event. We were both so grateful for an opportunity to take some of the fear out of the hospital. Amaya's next surgery is about eight months away and she sometimes mentions, being nervous or scared. I can't say that I blame her, but we want to help her be as calm, relaxed, and unafraid as possible.  That's why events like this are so great.
    It was interesting to me that both girls really wanted to go into the hospital. We did and had some snacks at the cafeteria. Amaya led me to the table where Josh and I sat about seven months ago while we waited for her to get out of surgery. That was such an emotional time. I remember not really being able to eat, starring off and crying.  We had a pager that the hospital provided to us give us updates from the operating room, and we both looked at it so often.
     And now here we were seven months post surgery. Grateful that the superknee procedure was so successful and gearing up for the next surgery (where she'll have her femur lengthened, her hip corrected, as well as the knockedness of her femur corrected). We feel a bit anxious, nervous, scared and hopeful.  Very hopeful.

  

Dictated by Amaya

"I was scared, but not anymore. About getting the other surgery and taking the medicine too. The medicine I had to take last time that helped me and the IV too. And I like that the doctor helped me and I really like that my mom made a blog for me."

A conversation between sisters

     I overheard the girls talking this morning. Lidie sat next to Amaya as she was going potty and asked her, "you got owwies Amaya? Are you okay?" Amaya responded, "yes Lidie. I have one short leg, and one long leg. And I didn't have any ligaments in my knee, so my doctor put some in. That's why I have that scar, that's where he put it in. Do you wanna touch it? And guess what Lidie, I'm gonna have another surgery, and I'm gonna have a robot leg and then people can sign my cast. And I'm gonna ask my doctor if I can see my x-rays and keep the robot parts when he's done. It's gonna be cool!" To which Lidie responds, "I'm gonna have surgery too!"
     I was so glad that I was able to overhear such a conversation. Something about how calm Amaya is when she explains her condition and her treatment that always makes me smile. And it's so sweet how kind and compassionate she is for the other person. She told Lidie, "it's okay sweetie, I'll be fine, don't worry, it doesn't hurt me, I'm okay." She always tries to comfort and console others. I'm always amazed by her understanding and compassion. Times like these reassure me of her ability to handle all the challenges that will come her way. And if she can do it, so can we.

Here are a couple pictures of the girls.

Interview with Dr. Paley

     I just added a link under the link section titled "interview with Dr. Paley." I found it on another blog that I follow, Daniel's Steps.  The link goes to an interview conducted with Dr. Paley last February.  Dr. Paley is an orthopedic surgeon who has pioneered many treatments for PFFD including the super knee procedure that Amaya had done this January.  He does most of the lengthening surgeries in the country. Many people travel from other states and other countries to seek his opinion and treatment. He's located in West Palm Beach, Florida.
     The interview focuses on the lengthening procedure and gives lots of information about the process (which we will be doing next spring with Amaya). If you get the chance I highly recommend reading it, especially if you or your child have PFFD.