Cerebral Palsy Awareness Month

Are you ready to learn with me? March is Cerebral Palsy Awareness month, and it just so happens that right now I am "hungry" to learn about all I can about this condition that is part of who my daughter is. Nina came to us with many challenges, and in order to overcome those that come from her Cerebral Palsy, I am trying to learn all that I can.

So, in the next few months stay tuned as I share about choosing to adopt a child with Cerebral Palsy, living with Cerebral Palsy (from the mom's perspective) and I might even have some new friends share a little of their story right here!

And finally, just like I have invited people to ask any questions they have about Down syndrome and Nichole during Down syndrome awareness month, I am inviting you to ask any questions you have about Nina or Cerebral Palsy. If I don't know, I will find out!

8 Years!!!

"Come and grow old with me, the best is yet to be"

Eight years ago, I walked down the aisle holding on tight to my dad's arm and trying to control my trembling lip. At the front of the church, Andy waited for me. He was so handsome. I loved him, loved him more than I thought was possible.

Eight years and that love has grown as we have done life together.

I am honored that he chose me, and I cannot wait as we share the rest of our lives together.

Turning 30

Today is my 30th birthday, or like my friend Julie suggested, the first anniversary of my 29th birthday.

Somehow, it seems like a monumental age. I always thought of 30 as an age where you look back and look at all the great accomplishments you have achieved in your life, and all the ways in which you have made a difference.

I know in the eyes of the world maybe I have not accomplished much. Quite honestly, many times I feel that way myself. I have piles of dishes, piles of laundry, and endless meals to prepare. I am a cook, a maid, and a chauffeur. I wipe runny noses, play Barbies, and watch cartoons. I don't even get to shower everyday. And sometimes, when I get together with friends, we talk about the dishes, the laundry, and the kids. In the midst of all of that, I try to keep the spark in my marriage because I love my husband and want our girls to see what love looks like.

I never pictured myself here, where I am, at age 30. I pictured something glamorous, something romantic, maybe something that people would point at and say, "Ah, she got it!" I don't have that, not even close. What I have, is a life that has been offered to God, for Him to take and use as He wants. I have been broken, worked on, and changed. It has been an adventure, and although there have been storms and hard times, I think my 30 years have been beautiful.

I am married to a man that I still cannot believe chose me. He holds my heart, and I am lucky to have him. We try hard to make our marriage a priority and I am so thankful for that.

I have 3 beautiful girls. Ellie is everything I ever dreamed of, she is so full of life, and I am proud of her, so proud of my little girl. Nichole came to me and challenged the things I held as meaningful in life. Her extra chromosome had been an incredible blessing, she is my teacher of life. Nina has been a fiery furnace, and how God has used this little girl in my heart. What an incredible journey she has brought me through, and how lucky I am to have her.

I am 30 years old. Wanting to live a life that honors God, with everything I do, and with all that I am. And I am excited, excited to see what else in store God has for me.

(Yep, this is me when I was 4 years old)

Periorbital Cellulitis

Wednesday morning Nichole woke up with a puffy eye. I was not too worried about it and gave her some benadryl. By nap time, I felt her eye had not improved and she seemed crabby. I woke her up from her nap and to my surprise her eye seemed much worse.

Thankfully, we have an incredible optometrist that was willing to look at Nichole's eye. He made sure she was tracking well, put some dye in her eyes and checked with a black light to make sure there were no scratches that would make her actual eye get infected.

He advised fro us to take Nichole to the doctor the following day and that she would need some stronger antibiotics to get to that infection before it became something more serious.

The thing is, Nichole has been taking antibiotics for the last 2 weeks. Amoxicilin and Zithromax did not help, and because Nichole has Down syndrome, her inside "tubing" is a lot smaller, so little colds can become big colds. A bad sinus infection, can get nasty. And for Nichole in particular, any cold means it will affect her eyes to some degree. Just never like this before, and this also did not seem to be her worse cold or sinus infection she has had. Really, we thought this wasn't too bad.

Thursday morning we went to see the doctor and sure enough, Nichole was on her third round of antibiotics, some pretty powerful stuff.

But then I woke her up from her nap and I could see blood in her eye. I rushed to the doctor with Nichole. Our doctor called an ophtalmologist who said to go to the ER where he would check Nichole. This doctor met us as the ER desk. As soon as he saw Nichole's eye and took a look at her he confirmed our fears. She has Periorbital Cellulitis, and in the hospital we will stay for a couple of days.

She is getting antibiotics via IV for 48 hours.

The good news is, we got her in right in time before it got worse, and they have drawn blood to see that the infection is not spreading and this seems to be working. She is being such a trooper. Hates the IV but has resigned herself and is letting it be. She is loving watching her shows and playing with the iPad all day.

On the home front, Ellie woke up with a fever. So we have a sick girl at home and one sick girl in the hospital. This same virus has been punching our family for a while. Last weekend I was sick and I had a fever for about 3 days. We have not been able to make it to church for 3 weeks! I don't see us coming this week either (Sunday is my 30th birthday!) I know this year has been hard for a lot of families, lots of people sick. So I have to say that I agree with the many who say, "I cannot wait for Spring!" We will forget that spring also means allergies, because for now, Spring means fresh air and less sharing of germs!

She is Not a Baby, Treat Her Like a Big Girl

About a month ago I posted about the challenges we face with Nina and her Cerebral Palsy. From our experience with Down syndrome, I know that parents are the experts.So in that post, I was "Calling all Cerebral Palsy moms"...and they responded.

Learning from other moms that walk the same road we walk is so helpful! Let me say it again, it is so helpful! They get it, they have been there, they know what it is like. The most helpful part I believe, is that right now I am a sponge and I am so ready to learn and listen to what these mom's have to say. I have been challenged in many ways and I have put some of their advice into practice.

My new friend Cary blogs at "About the Small Stuff." She has taken the time to e-mail back and forth with me as I ask questions. She has challenged me! Her son, Ben, has Cerebral Palsy (same type as Nina) and I have learned from their journey.

I came to realize, that I was treating Nina like a baby in the places where her disability is obvious. Carrying Nina is our normal, but it can become a bad habit that hinders her from becoming independent.

Nina's Cerebral palsy affects her mobility the most, and I have been so frustrated by her lack of desire to walk, that I never realized that I was treating her like a baby in the very area we struggle with! So if she needed to go potty, I was picking her up and carrying her to the toilet.

Not anymore. Success is found in the small things, one step at a time.  Now when she tells me she has to go potty,  I simply tell her to go. All I do is make sure that the toilet insert is on, but I expect her to do the rest. Kids her age do it, and so will she. It takes her a really long time. Her potty trips average 15 minutes, but that is okay, she is so proud of herself. If we go somewhere, I expect her to walk for as long as she can while she holds my hand or uses her walker. She actually has come to prefer holding on.

This new way has made life easier for me, less demanding physically. On the other hand,  it has made it more challenging and physically demanding for Nina, she is being pushed.And while there are times where we have to help her, those are amazingly fewer that I thought.

And the results from this change?

Nina said today, while she was taking off her shoes and braces, all by herself, "Mom, I wish I could walk. I want to walk"

Her words touch my heart and bring me to tears. That statement right there, speaks so much more than the actual words. She wants it, she really wants it!

Answering some questions

How do I sign up to receive books and write reviews? I have been looking around on the website bit I can't find anything about it.....

I get my free books from Blogging for Books. It is a Waterbrook Multnomah program. Just go to the Blogging for Books website and click on the "Sign up Today" tab.

As a side note, if you notice that there are words highlighted on my posts, it means it is a link, so just click on the link and it will take you directly to the site I linked to.

I liked what you wrote about advocacy and I do think I'm still too emotional though waaay better than I was. How do you get past that?


I can only speak from personal experience. For me, time has made a difference. Also, some family and friends have shared with me that they were hesitant to say anything to me about Nichole or Down syndrome because they were afraid of how I would react towards them. I don't want that. I want to be open, to be understanding, and to be gracious. One gentle step at a time, nobody likes to be pushed in the deep end without a warning.

And that said, I know I still have room to grow!

Drawing With Rich Davis

Ellie is a great little artist. I think if it was up to her, homeschooling would consist on doing crafts and painting, coloring, and playing Barbies.

If you ask her, she will tell you that when she grows up she is going to be an artist ballerina teacher. Yeah, all 3 of those, all at the same time...however that works out!

I loved art as a kid but was never great at drawing, so I focused mainly on dancing. Now that I have a little girl that loves to create, I find myself loving the times that we have to create together. However, I need help! I am not the most talented or creative.

See Ellie's pictures? Now, she really is a great little artist, but really, this is all thanks to her new art teacher, Rich Davis. We first heard of Rich when he contacted us and offered to send us his new game "Pick and Draw" and see if it is a good tool to help children with special needs learn how to draw. That post will be coming up soon!

Along with the game, we discovered his web site, and Ellie and I are loving it!

So go ahead, take a peek at Rich Davis and his drawing website. He teaches you how to draw fun characters step by step! Kids love it (and moms too!)

Night-Time Potty Training Your Child With Down Syndrome

I have posting quite a bit about potty training since this is where we are at with Nichole right now. She is getting it, and I know that eventually she will be potty trained. It might take us a couple months, or a couple of years, and that is okay.

I do know that day time potty training will be easier than night time potty training. I also know of a few parents of older children with Down syndrome that have mastered the day time but not the night time.

Since I am no expert, and it would be silly for me to give advice in an area we have not yet experienced, I will do something better. Go read my friend Leah's blog on night-time potty training and a great little tool that has helped both her children with Down syndrome.

Teacher Born With Down Syndrome

Individuals with Down syndrome are challenging the stereotypes that have held them down for many years. It is exciting and encouraging to see a story like this one. It makes me dream and think about my daughter and the stereotypes that she will tear down as she proves how much she is capable of.

Nichole sweetheart, the sky is your limit, and you have great role models to follow!

And even if you do not have a child with Down syndrome, this 2 minute video is worth watching just to be inspired and challenged. Take a look!



Yes, she was homeschooled!

He Holds My Heart

Last weekend, Andy and I went to watch "The Riverdance" as an early birthday present for me (I will be 30 in a few days...oh boy!) Since we would be spending the night away, we decided to take an extra day and also celebrate our anniversary a few days early as well. Every year we take time just to be together. It is fun that we can run to Perkins late at night, just like we used to when we were dating.

We had a wonderful time!

This man is an incredible friend. The respect and admiration I have for him increases as I watch him do life and love people. I got lucky, really lucky. And on top of it all, he is hot!

He holds my heart.

Book Review: The Dragon and the Turtle Go on Safari

A Waterbrook Multnomah Book

The Dragon and the Turtle

Go On Safari

by

Donita K. Paul and Evangeline Denmark

Illustrated by Vincent Nguyen

Best friends Padraig the dragon and Roger the turtle are camping out at the feet of mount Sillymanborrow. They make a fire, eat marshmallows and crunchy baked bugs. They are excited and determined to spend all night outside in the wild. Their bravery is tested as they hear the noises around them, and their imagination turns squirrels into giraffes, raccoon into elephants, or a small kitten trapped on top of a tree into a baby leopard. At the end of the night, their friendship and bravery allow them to see the beginning of the morning, and the brave explorers realize they indeed spent the night outside.

The Dragon and the Turtle Go On Safari is a fun story for children. The illustrations are beautiful.

As the mother of three girls, I thought this would be a fun story to read together. While my girls enjoy reading about princesses and girls, they also enjoy animal stories and books that encourage the imagination. And while I would have liked to give this book a high review, it is not the case for my girls. They did not think it was as fun as other books and they easily put it to the side...without finishing it. I have asked if they want to read it, and other books have gotten picked over this one.

You can find out more about the book and read a short excerpt by clicking HERE.

I received this book for free by Waterbrook Multnomah in exchage for an honest review.

And if you want to recieve books for free too, check out the Blogging for Books program from Waterbrook Multnomah!

Writing Letters!

Do you see what I see? Nina is tracing letters!

A year ago, Nina was just learning to hold a pencil or a crayon. Any marks made on paper were a big accomplishment. First, she began to make little marks here and there on her pictures, then slowly she began to make more purposeful strokes that became coloring a picture. She is still not able to stay inside the lines, but she has come a long way when it comes to coloring.

Attempts at writing letters have been a completely different story. Coloring has been hard, writing letters has been a struggle.

Back in October we began to suspect that Nina had problems with her Visual Perception Processing. The Occupational Therapist gave me many fun ways to play with Nina and help her develop this skill. We just didn't know if her problems were related to the little stimulation she received at the orphanage, or if we still had a window of opportunity to see her develop in this area.

Something we have worked on is crossing the midline. It means that we encouraged her to make crosses on paper. Starting with the vertical line, and then ONE fluid motion from left to right crossing the vertical line. Nina was not able to do this, she just could not get it, her visual processing was breaking down.

Her progress is really incredible! She asked me to write the word "cat," because she wanted to copy it. When she showed me the paper where she had copied the word I was absolutely thrilled! I couldn't believe it, and Andy was just as surprised. The bets part, she was proud of herself, and she is ready for more!

Becoming Your Child's Advocate

Speak up for those who cannot speak for themselves, for the rights of all who are destitute. Speak up and judge fairly; defend the rights of the poor and needy.

Proverbs 31:8-9

When Nichole was born with Down syndrome I began to learn as much as I could about her condition. I felt the need to become an expert and help educate people. I was passionate and vocal...really vocal. I had become her advocate, but was I an effective advocate? This is a thought I have been processing lately, because in order to see positive results, I need to be an effective advocate.

You see, when Nichole was a baby, I was learning how to be the mom of a child with special needs. Out of my great love for her, I wanted others to see her just the way I saw her. I wanted people to understand Down syndrome and see the beauty I saw.

Looking back, I believe that sometimes my "all-out" ways stunted me from being an effective advocate and perhaps even approachable. I know I spent energy focusing on weather people used People First Language, or if they used the correct terminology or up to date information. I did not expect people to be at the same level of awareness I was, but I think maybe I did expect them to arrive to the place where I was once I had explained the ins and outs of Down syndrome. I wonder how many people felt overwhelmed by me.

I was learning to do life with Nichole, and the many layers of my life touched by Down syndrome. She is only 3 years old, and I still have a lot to learn. However, Down syndrome is so common for me, and for our family, that I believe I can look more objectively at what an effective advocate is. After all, I now have 2 girls to advocate for (actually, make that 3, Ellie needs her mama to advocate for her at times)

Why am I thinking about this right now? I just got the book "From Emotions to Advocacy" and I am learning about being an advocate in the school system. This book, however, has challenged me in the "personal level" advocacy, and the many times that I have allowed my emotions to take over. Effective advocacy happens when emotions are under control, it is hard to advocate when you are angry, or hurt by a comment or an action.

But being Nichole's and Nina's advocate means that I get to practice Proverbs 31:8-9. I get to speak up for Nichole and for Nina, for their rights, and for their needs. Why? Because I want to see Nichole and Nina's lives changed, I want them to thrive! Regardless of their disabilities, they have great potential, they have gifts and talents to contribute to those around them.

Winner of "The Charlatan's Boy"

The Charlatan's Boy


Min: 1

Max: 12

Result:

2

Powered by RANDOM.ORG

The winner is Monique, she was the second person to leave a comment! Monique, be on the lookout for an e-mail from me so I can send you the book!

Thank you all for leaving your favorite books. It gives me more ideas of what I can read next.

Some of my favorite books are:

Peace Like a River by Leif Enger

The Book Thief by Markus Zusak

The Giver by Lois Lowry

Harry Potter series by JK. Rowlings





Edited to add: Sorry friends, I could not figure out how to get the random.org button to stay fixed with the results! So I just had to copy the results from the button. I did not want this to be unfair to Monique since she won!