Weaknesses and Strengths

Joel gives all of the kids a blessing at the beginning of the school year. It's been a very sweet experience  each year, in general (although Joseph NEVER sits still through them). Anna always has me write notes for her, so I end up doing it for everyone. I have been thinking a lot about one of the things Joel said in Lily's blessing this year.

He blessed her that her weaknesses would be her strengths.

I thought that was profound. The more I think about it, the more I see how that is true in her life, and how it can be fulfilled more over time.

Being disabled has definitely been a challenge. She can't walk, uses a wheelchair, deals with a lot of medical testing, check-ups and even hospitalizations. Despite all of that, I would say that her disability has made her a strong, courageous and even outgoing person. She has attracted so much love and friendship as we have sought help and support from others. She has had to work harder to achieve simple tasks like taking her own shirt off, or crawling, or getting off the couch or going up and down stairs. But, learning to do those things has become empowering. And each skill that she masters brings with it a light and beauty to her. Every day I see her weakness less and her strength more. I feel like as she grows this will only be magnified.

Lily - You are an amazing girl with unlimited potential. I believe that you can do anything!

I tell her on a regular basis to "stand tall with your voice." and I often add "Just because you can't stand up, doesn't mean you can't stand out." I truly believe Lily's weaknesses will become her strengths throughout her life. I am deeply blessed by having her in my life.

27 And if men come unto me I will show unto them their^aweakness. I ^bgive unto men weakness that they may be humble; and my ^cgrace is sufficient for all men that ^dhumble themselves before me; for if they humble themselves before me, and have faith in me, then will I make ^eweak things become strong unto them. 

 - Book of Mormon, Ether 10:27

A Little Magnet

I love this photo of Lily. It really captures her happy, sweet personality.

A few days ago I was leaving the Dr.'s office with Lily. (She is on her 2nd UTI in a month and we were working with her labs. Bleh!) Side note: last time we were doing labs there, Lily made friends with a woman who has cancer, asking her why she doesn't have any hair. Sounds bad, but they had a very nice conversation and had quite a few people listening in.

Anyway, as we were going out of the building I took the opportunity to encourage Lily work on independence. I had her push the button for the door, push her wheelchair over the door thresholds and down the sidewalk and finally down the little ramp into the street. She needs encouragement but does it all very well. Now I am realizing she's old enough to learn street safety. So I had her look both ways and encouraged her to watch for cars pulling out in the parking lot. Just as we began moving through the lot a car showed signs of backing out. So I pointed the car out to Lily and she stopped and waited. The driver saw us and waved us on. So we went ahead and got safely to our car. 

As I was about to load her into her seat, that same car pulled up and the man leaned over and called out, "Bless you little girl!" He shared that he has had to use a wheelchair off and on in his own life from the time he was young and wished her all the best. 

Sometimes I forget what a bright little light I have for company all the time. She is a magnet for friendship and kindness.

Making new friends comes easy

Lily has begun talking to strangers everywhere we go. She has made friends in restaurants, in long lines, in waiting rooms, at the airport etc. Last week we were at a restaurant at the Gateway and she made friends with a girl a few tables over. Joel snapped a picture of them together and we sent the picture to her phone. Later that day she asked permission to share the photo on her blog. Her write-up is pretty cute. It is a sweet description of Lily's friendly and happy personality.

Click on this link:

http://heidikins.com/2013/07/10/alphabet-soup-l-lily/

Eryn's Published Book

Eryn wrote and illustrated this sweet book in Mrs. Kelly's class this year. It is worth sharing.

Summer So Far

Summer 2013 has been very nice so far. The best part has been having an open schedule. Each day the kids are doing chores, a little school work, exercising, and reading. They are each growing so fast. I have a feeling I won't have too many more unscheduled summers like this one.

We started the summer by celebrating Joel and Eryn's birthdays. Eryn had a cooking party with a few good friends. Joel ran the waffle station and I oversaw the cupcake decorating. The kids were all stuffed at the end of the party! This year Eryn has proven to be really responsible, a good friend and a great student. I love her very much!

A few days after school was out we went on a trip to California. Joel had a work conference that included some family activities, so we went along. We did one day at Disneyland and a day at the San Diego Safari Zoo. We swam in the pool quite a bit. I really think our family is the most happy when we swim and play together. It was a great trip.

We've had our share of doctor appointments and hospital visits already. Eryn had a check-up with her specialist in Urology towards the end of the school year and then again after our trip. (She is pictured below eating her traditional donut at the hospital cafeteria). We will go back again before school starts. She is doing very well. We are just working with her on some new schedules, skills and habits related to her bladder and kidneys. 

Lily's been in to Shriners for fittings for her braces. Hopefully we will bring home her HKFO's after her  three hour appointment this week and start working on some physical therapy again. I took Lily in to the Emergency Room last weekend. She had a high fever for about 5 days along with vomiting. We were concerned that she was not holding anything down and that she was getting dehydrated. She was so nauseated that she was dry heaving off and on throughout the day. Of course worries about her shunt were at the back of our minds. At one point the doctors insisted on examining her shunt through x-ray and c-scan, but tests were clear (phew!). They ended up keeping her overnight for observation and figured out that she had a virus called the Adenovirus. We were sent home the next day even though she was still feverish and nauseated, knowing she would improve within the next three days. Thankfully she has recovered and is feeling better. That whole thing was pretty rough on me. Thankfully family and friends gave us great support (as usual) through babysitting, meals, phone calls etc. I am always reminded how blessed we are when things like this happen.

P.S. We were back in to the dr. office again this week with a bladder infection. Now she's on antibiotics. Sometimes it feels like this stuff never ends. . . I'm glad she is cooperating and taking her medicine, though.

We made it up to one of my favorite places in Utah for family night last week: Silver Lake. Emily's family came with us for their first time. It was so relaxing, cool and beautiful. We also stopped at Hidden Falls on the way down the canyon. Utah's mountains really are so  beautiful! 

I've been doing weekly story hours for my kids this summer. I have always loved going to story hour at the library with my kids, but since moving to Utah it has been less appealing because of the large crowds. So, doing it on my own for my kids has become a nice way to keep the numbers small. I have also really enjoyed the opportunity to research, choose the books and prepare.

We celebrated the 4th of July very happily this year with swimming, 

a family BBQ and a neighborhood party. 

Support Group Bowling Party and more . . .

Lily, my mom and I went to our Spina Bifida Support Group's Bowling Party over Memorial Day weekend. I always love being with other SB families. I get so much strength and encouragement from being with them. Lily had a great time bowling with her grandma.

Anna performed with her class in a melodrama play about Timpanogos and the Moon. I spent hours volunteering for this: teaching the boys dance, arranging costumes to be fixed, practicing narrations with the kids and running the entire play multiple times.

Here's an action shot of Eryn playing soccer in her last soccer game.

Wheelchair Dance Recital

Lily performed with her wheelchair dance class in a big recital last week. It was a great experience for her. She loved all the support she got from family and friends in attendance. Her class danced to a piano version of Snow White's wishing well song. Totally made me cry. Eryn was her helper on stage. She had been practicing with Lily and her class for weeks. I was proud of her for supporting Lily so well. All of the girls in the class have Spina Bifida.

Lily's Giraffe Song

Lily is a beautiful little singer. I love this short video of her singing at the piano with Lila. Her high note is so sweet.

These are the words: "Yesterday I had to laugh, because I saw a big giraffe. He had a neck so very high, it reached way up into the sky."

Look who's learning to stand!

These are not the greatest pictures, but I just wanted to share! Lily has received her first pair of HKAFO's (Hip, Knee, Ankle, Foot Orthotics). These are tall braces that will help her to stand and eventually walk (with a walker). We are trying to keep things very low pressure right now. So any time she wears her braces we try to do something very fun. We make her feel as safe as possible, then as she gets more comfortable we are allowing her more freedom to be independent. So . . . if you see her out and about in these . . . please cheer her on!! She is very proud of them.

The Worth of a Soul

". . . some of the sweetest spirits are housed in frail frames."

I heard a beautiful talk during General Conference (church) last week related to raising children with physical challenges. I really related to so many of the points made. One scripture Elder Rasband quoted was: "Remeber the worth of souls is great in the sight of God."

I believe so strongly in the "worth of a soul." In fact this was something I deeply pondered during my pregnancy with Lily - because of the "options" we were given. Joel and I were clearly keeping our baby. But it was hard to come to terms with the fact that we were bringing a child into the world with so much working against her. So many challenges upfront. Over time I came to realize that it was God's will that her life start in this way (not mine). I also came to see that my daughter's life had no less worth than a child born with a perfect frame. Although at the time I mourned her impending trials (all outlined in brochures handed to me on my way out the door from my ultrasound). I now marvel at her strength, her courage, and her beauty.

Dr. Office - Sweet Moments

I took Joseph and Lily to the Dr. the other day. Lily had a cold (turned out to be strep throat - blah) and Joseph had a check-up. As we entered the office Joseph had to be weighed, measured, have his blood pressure taken then put on a gown. The entire time Lily followed him around in her wheelchair saying "It's okay," and "don't worry," and "it's not scary." She was extremely worried about him and wanted to be sure he wasn't upset. Obviously she has some tough memories from her many doctor/hospital visits and didn't want Jojo to experience the same thing. It was very sweet. When it was Lily's turn to be examined the doctor determined she needed her ears cleaned out. So while I held her head in position, the nurse sprayed a steady stream of water into her ears and of course she began to cry. Now it was Jojo's turn. He couldn't stand to hear her crying, so he kept trying to find a way to get to her to comfort her. He ran out and got her a lollypop and sticker, then he hugged her and talked to her. Later he asked her if she wanted to to sit on his lap. She said yes, of course. :) The whole scene was so precious. It made me think of that scripture that teaches us to, "mourn with those that mourn and comfort those that stand in need of comfort." So grateful for these two sweet children in my life.

Primary

Lily has started primary in church this year. Although she is my fourth to become a Sunbeam, her transition has been the sweetest to witness. I can hardly express the joy that I have felt as I have seen her sitting in her wheelchair on the front row fully participating. She has learned a number of primary songs already and she sings them every day! I love that she is learning the gospel and I feel grateful that she is in such a sweet and inclusive environment.

Wheelchair Dance

Joel's brother, Jake created this nice video of Lily's wheelchair dance class. Watch and enjoy.

Vegas Baby!

Visiting the M&M store.

Fun night of Apples to Apples.

I love seeing my kids laugh.

Visited the Las Vegas Temple on Sunday.

We were able to catch our friend on her mission in the middle of church.

Fun on the airplane.

Waiting to watch the fountains at the Belaggio Hotel.

I just thought I would include this picture of Lily playing play dough with her cousins. Play dough has been a great tool for gathering friends and siblings around Lily for play. I love this idea of attracting children to play with Lily. I plan to keep finding ways to do this over the years.

We took a short trip to Las Vegas as a family just after the New Year. This family trip was not my favorite, but there were some fun moments. Probably my favorite part of the trip was the night after we had had a pretty lame day. Nothing seemed to work out well. So that evening I bought Apples to Apples (Jr. version) and brought it back to the hotel. We played as a family into the evening, minus Lily who was wiped out. We laughed and laughed. This was probably the kids favorite part of the trip as well as swimming at the hotel's lazy river.

Lily's Foot

Lily's scary, swollen left foot and ankle.

Bad sore on the heel of her foot.

She was very cheerful in the hospital. The nurses could hear her singing from the halls.

Lily got her last set of casts off just before Christmas. Thanks to our good friend Lila's support, Lily was very well behaved and much less dramatic getting the casts off this time around. :)

When her casts came off, immediately we noticed two purple pressure spots on her left foot. Within a few minutes they began to swell and by the end of the day the whole foot was swollen. This was on a Thursday, so by Saturday night (Christmas Eve) we were starting to feel concerned. Both pressure points turned into sores and the foot was red, hot and very swollen. On Christmas Day we talked to some friends and family who took a look at it and everyone agreed it would be best to get it checked out. So. . . Christmas night we took her to Primary Children's ER.

She was diagnosed with Cellulitis. That just means that bacteria got into one of her sores and infected the tissue. If gone untreated the infection could go to the bone or up her leg. In more serious situations it could cause problems with her shunt (due to the bacteria in the body) or turn into gangrene. Needless to say, we were glad we took her in. Antibiotics clears the problem right up but our concern was that Lily spits out all medicines. We had no confidence that she would even take one dose. So doctors agreed to put her in the hospital for IV antibiotics.

She was in for a little less than two days and her foot looked so much better! At that point we agreed to send her home with a prescription for antibiotics. Joel's sister gave us a great suggestion to put her meds in a drinkable yogurt (danimals). This worked like a charm! She had no idea she was taking it. Phew! We are glad that this little ordeal is over. Thank you to those who brought in meals and babysat, and to Joel's mom for helping with the kids.

In the hospital, we had a wound specialist come in and teach us about how to care for Lily's pressure sores. The simple teaching we received about the healing process will be very helpful to us in the future if Lily has any other problems with sores.

Day #363 - Lily's feet are improving

First set of casts off for a few minutes. I wish I could show a before picture of her feet. But we never took one.

Before the drama. She did not like the little saw used to take her casts off. We also tried giving her a bath and she went into freak-out mode. :(

Home and happy!

The first set of casts came off today and I was able to see how Lily's feet are improving. They really are looking much better. Lily went for pink casts this time around.

Day #359 - Lily's Nap

Lily has given up on napping recently. Or you could say that I have quit trying to get her to nap. It became too difficult once she realized she could make herself throw-up. :) So, imagine the pleasant surprise to find her asleep on Lila's shoulder today at noon. She ended up taking a two and a half hour nap on her couch! Nice.

Day #356 - Young Women Helpers

Since I am trying to avoid a break-down, I decided to call the Young Women President and enlist the help of the Young Women in our ward with Lily. I feel like I am not getting much done because she needs more attention. We agreed to have the girls sign up to come in and play with Lily two days a week for one hour. Today was the first day, and I was grateful to be able to feel like she was occupied while I got a few things accomplished. I wish I was a super mom. But until I become that amazing woman/mother I want to be, I am grateful for the support!!

Day #352 - Opportunity to teach

Little Joseph asked me a heart-breaking question the other day. He said, "When Lily gets those casts off, will she stand up?". Basically he thought that maybe the casts were fixing her legs so that she could walk. I forget sometimes that he does not fully understand Lily's situation. The two big girls have a pretty good understanding. But up until now I haven't had to explain things to Joseph. I think I handled it fine. We discussed what her casts were for and also talked about the braces we are going to get to help her stand up. I let myself cry about it later. Sometimes I think it's okay to stop and realize what I am dealing with and to acknowledge my feelings. Then I just have to move on and try to be positive.

Day #350 - A Table

We decided it would be helpful to have a table in the house that Lily could sit up to in her wheelchair. Since she is spending more time in the house in her chair we thought she would enjoy sitting at a table doing fun activities (puzzles, play dough, coloring etc.). Lila helped us borrow a table from her brother's family (Gary) that would work until we found one we wanted to purchase. We have been so grateful for this little table. It was very useful and has already attracted siblings and friends to play. We have now bought a great table from Ikea that is adjustable in height and will work perfectly.