Going On a Field Trip!

Last week, I got to join Ellie and Nina on their school field trip. It was a hot day at a farm, but it was so much fun!

I took lots of pictures, and so you get a photo-dump post today!

Of course I asked the girls to pose, and Nina is a more willing participant, since she is not running around all over the place (which is actually something I appreciate about CP, Nina actually gets to hang around and I spend more time with her)

The plan was to use Nina's walker, but we soon realized that the terrain was not ideal for the walker. Not to mention the farm was pretty large and I wasn't sure how much she would last there. One of the owners approached us and asked if we would like to use one of their wagons. I was so thankful! So we got Nina in her fancy ride, then I folded up her walker and put it in there, along with my heavy backpack. I also had the other friends help me push it, Nina loved it! Sometimes, she would lay down and close her eyes with a smile of contentment in her face. Love this girl!

 Our first activity involved these bouncy horses. There were three different sizes and the kids loved them!

 They also had stilts. I tried them too!

 One of the favorite activities was feeding the goats. It took the kids a little getting used to having the goats lick their hands, but once they got used to it, they loved it!

And yes, Nina was balancing like a super star, even while feeding the goat!

Another favorite activity was petting the bunnies. Now, I will say that some kids were mean to the bunnies, picking them up and dropping them, or jumping on them (one little bunny had his back broken). These poor animals were terrified of the children and trying to get away from little hands, so I had to intervene and help Nina hold a bunny. You cannot see this here, but I had three other bunnies hiding between my legs trying to stay away from the children.

 And of course there was petting the kitty. Nina loved it, Ellie was scared of the kitty, afraid she would get scratched!

 There were a couple of rope swings, Ellie did amazing! We tried to get Nina to do it but that proved to be challenging.

Next to the ropes, there were these long tunnels, I love the pics, and there is a story to this photo, but I will share more about it at the end of the post, because it was a God moment, and we are framing the picture with a special saying for Nina.

 The girls with their teachers. We have AMAZING teachers. I love them to pieces. Both of them! Ellie's teacher challenges her and affirms her, as a mom I appreciate that so much! Kids need to hear praise form other adults in their life, not just their parents! Nina's teacher has been such an encouragement to ME. There have been times when I have had doubts about what Nina can or cannot do, she looks at me straight in the eye and says, "She can do this." and I just need to hear that from someone else! So often I am the one having to advocate for my daughter. She is one remarkable lady, how blessed we are that she is Nina's teacher!

 Nina got the "hamster wheel" turning!

 

 They had these sections of large pipes (same as the long tunnel material). Except these were set on some sort of rails. The kids then got in them and rolled them from one end of the rails to the next. I tried it, and fell a couple of times. it was fun!

 

 

 Fun tractor!

Wooden horses, and swing horses. No real ones but hey, the farm had horses kids could ride!

And proof that I was there with my girls!

This was not an ordinary field trip, God met me there in a meaningful way. The picture below was a gift from God.

I actually wrote about it for Not Alone. If you want to read that post, click here. I highly recommend you do! And it is a pretty short read ;)

Here is the significance of this photo:

God had been showing me His love for Nina throughout the day. His love, His delight, His pleasure. Then we got in the tunnels, and it was so bright I could hardly see. Then I snapped this picture and God reminded me once more that Nina is His beloved, and His light shines bright on her, illuminating her, reminding me, and showing her, how much He loves her. it was a Holy moment, right there at the farm.

 And this might just be one of my favorite pictures of all times, because somehow God allowed me to capture a Holy moment.

So to get the full story, do check the post for Not Alone in the link above.

Our First Dance Recital

I have so many pictures to share and all sorts of catching up to do. I will begin with most recent events and work my way back, so bear with me.

To start, Ellie had her first ballet recital last Friday. She did amazing! I know I am her mom, and I am most likely biased, but I think she stood out in her dance. She was poised, graceful, and she flowed with the music. This girl has the gift of dance!

I was a dancer since I was little. I danced ballet through the Royal Academy of dance, and danced tap, jazz (modern theater), and national dances through the Imperial Society of Teachers of Dance. My Junior year in high school after one of my examinations, the examiner offered me a possible slot in one of their companies, she said if I kept it up, she would help me get to England and continue my dancing with them. Then we moved to the US and there was no ISTD studio in our area.

To say the least, dancing has been a part of my life for a long time. I teach Zumba (which is close enough for now) but I hope to be involved in dance again.

I did not realize how invested I was in dance until Ellie and Nichole began dancing this year. As we got ready for recital, I understood the "parents living through their kids." I could get really caught up in this, so I have to watch out my attitude (because I had a bad attitude most of the year, expecting the same quality and standard I grew up with) and I don't want to take the enjoyment of dance away from Ellie.

Ellie was a shining star (I am her mother, what can I say!).

My little ballerina!

The studio sent very detailed instructions on how to do makeup. Including what eye shadow color to use, and making a V on the eye corners. Ellie hated the makeup. We did makeup for rehearsal and there were minor tears involved not wanting to do eye liner. This was enough for her to say she did not want to be in dance if she had to do makeup like this. Imagine my surprise when we got to rehersal to find out nobody was making sure that makeup was done properly, and there were several girls that did not follow the "guidelines." I promised her we would go lighter on recital day.

The day of the performance with my little ballerina!

We got Ellie flowers and she posed for us after her fabulous performance!

Proud mama and daddy!

I already promised Ellie we won't bother with eye liner next year, I think she might stick with dance then!

Cerebral Palsy, Rhizotomy, and Gait Lab Study

A Gait Lab Study is done to determine the way someone walks (their gait). People with cerebral palsy have difficulty walking, and looking closely at how they walk provides information about how their body works, and what muscle groups are affected, shortened, etc.

My daughter, Nina, has spastic diplegia. Before her rhizotomy (SDR: selective dorzal rhizotomy) her cerebral palsy was quite involved. They chart kids in a 1-4 scale. One being mild, and four being most involved. My daughter was at a four before this surgery.

Before her rhizotomy, Nina had a gait lab analysis. This last Monday, she had another gait lab done to determine her progress two years following her surgery, and determine the next steps.

The progress she has made in two years is pretty amazing! Here is a before and after video.

These Girls Got Wheels!

One of the great and exciting rites of childhood is learning how to ride a bike.

I lived in a fenced-in neighborhood in Mexico City. Although we did not have freedom to wander anywhere we wanted, the neighborhood kids and I owned the safe streets of our small community. We had hills, empty lots where we built forts, and trees to climb. Oh the many days spent on my bike riding with my friends, the wind on my face, sun on my back, and the promise of fresh lemonade waiting for us when we needed a break.

The thing is, riding a bike is not the same for kids with special needs.

Last summer, Nina got to borrow an adaptive bike from the school so that we could work with her at home. Nina had an IEP last Tuesday, and Andy asked if we could borrow it again this summer. For many kids with cerebral palsy, things like riding a bike can be challenging because of coordination and strength.

But then Friday came along, and Nina decided, forget the adaptive bike, I want to feel that wind on my face the same way all typical kids do, I am not missing out on that!

So she got on the little bike with training wheels...and she took off!

This girl is ready to prove that she is full of potential. Amazing how chasing her as she rides her bike reminds me of where she would be at if we had not adopted her. Yet here she is, feeling the wind on her face, flying down the street on her bike!

And you know what? I think someday those training wheels will come off.

Now here is the deal, Ellie (my oldest) witnessed Nina riding her bike and thought, I am older than my sister, maybe it is about time I lose the training wheels.

So on Saturday she asked Andy to take the training wheels off and asked, "Do you think I can learn how to ride my bike today?" And he said, "Well, maybe it will take a little while, but we can start working on it." But she said, "No, I want to learn to-day!"

She has heard us say plenty of times, "You can do anything you set your mind to" and she believes it. She wanted to loose the training wheels on Saturday and learn how to ride her bike...so that is exactly what she did!

Today, both Andy and I have gone around the block with her a few times, and she already tried to ride "as fast as I can" which almost resulted in a wipe-out. Thankfully, she saved her balance and kept going.

I call this one memorable weekend!

Now to get the rascal to show an interest in riding a bike!

An Independent Walker, Cerebral Palsy Won't Stop This Girl!

Two years ago Nina had a Selective Dorzal Rhizotomy. It basically means that half of the nerve rootlings from her spinal chord were cut.

She has spactic diplegia cerebral palsy, which means that mainly her legs were affected...and they were really affected. The truth is, we had very little hope of her ever walking independently. In the picture bellow you can see how high she was on her toes, and that was her trying to get her heels down, mostly her weight was on her big toes. You can also see that even with her braces on, her heels did not touch the floor, she was still high on her toes.

But Nina is a fighter, a survivor, and she is walking independently. That is, most of the time, except for very morning at school as she walked down the hall to her classroom.

Well, this morning we realized her teacher forgot to drop off the walker in the office, where we usually pick it up. I told Nina to go ahead and begin walking while I got checked in so I could help her. it turns out, she did not need my help.

Yeah, today, I am claiming my daughter to be an independent walker! Watch her go!

When blogging blew me away

I began to blog because I am a writer, and writers write. But I also blogged because I wanted to connect with other parents that walked the same journey I walk.

Through this blog, I began to share about life with a baby with Down syndrome. After a while, I began to receive emails from other women who were struggling with a new or a prenatal diagnosis of Down syndrome. Somehow, it seemed, my words touched their heart and they needed someone to talk to. I prayed for each one of these women, and soon I recognized I was part of a greater story where I only had a small part to play. But however small, I considered it to be an honor and a “high calling” so I continued to write.

When our “special needs” family expanded by adopting a child with cerebral palsy, I began to write about adoption. Mainly, I was writing about the emotions of adoption, because I wanted to be honest and real about the process. Adoption was hard. I wish someone had reached out to me and affirmed that my emotions were normal.

I write because I want to offer hope, courage, and community to those reading my words.

I write because I don’t want the hurting, struggling, or broken to think that they are alone in this journey of life.

And I write honestly, because if I only tell you what makes me sound good, perfect, or like a worthy pastor’s wife, then I have cheated you in some way. If I tell you that adoption is hard, but I don’t tell you that it took me more than a year to feel any love for my child, I have alienated you if you too are an adopting parent struggling with love. If I tell you that I struggle with anxiety, but I don’t tell you that almost a year ago I had to ask for help, then I have made you feel lonely in your own struggles thinking nobody will understand or that you are “worse off” than the rest. If I tell you that being a parent is a joy, but I don’t tell you that at times I feel like a failure as a mother because of my media addiction, then I am not allowing a level of accountability or honesty to enter into my life, and maybe yours too.

Last week, I wrote about special needs parents feeling invisible. I wanted to affirm them that they are not alone, and that I see them. You can read that post HERE.

Wow.

That is where blogging blew me away.

In a week, that post has been shared more than 10,000 times on Facebook through my blog and through Not Alone.

And I want to say thank you! Thank you to all of you who shared that post.

Mainly, I am simply humbled that my words were able to encourage so many special needs parents. Because I do, I see you!

The typical sibling AKA the "normal" sister

April 10th is National Sibling day. In other words, a day set apart to celebrate siblings of kids (or adults) with special needs.

If you have been around here, you know I have 3 girls. My oldest daughter is my "normal" child. I use this term because I think this is what most people outside the special needs community use, but here is a little "educational moment" it is really more appropriate to use the term "typical." You know that little saying, "Normal is a setting on a washing machine" yeah, that applies for special needs too.

Because of the nature of this blog (and my writing) I really don't talk much about my oldest. And the thing is, she is pretty phenomenal.

Because of her sisters, she is one of the most accepting and understanding kids I know. I love her heart of compassion, and how well she "gets it" when it comes to other kids (not her sisters) having special needs.

I am proud of her. Okay, that might even be an understatement. But she really makes me proud, and in so many ways I look up to her.

So today, in honor of sibling week, I am sharing with you her newest passion: playing the piano. Ellie has been taking piano lessons for over a year. All of a sudden it just clicked and she plays every single day on her own, because it is fun. She works on her songs for her lessons, and then she learns her own songs, by ear.

Oh this girl is so talented! but she is also very shy! We have asked her several times if she would like to sing (she has a great voice too) but she does not want that type of attention. She might consider playing the piano, she said maybe for Mother's day. I think that would be really sweet.

So here it is, her first recital (and you all get to be the attendees).

From her piano lesson.

From her love for music, she figured it out by ear.

EDITED TO ADD: this post was inspired by my friend Shasta, who thought about making sibling's day sibling's week. CLICK HERE to visit her blog and the other blogs linked up. If you write a post about your typical kids, join us!