Saturday, February 14, 2015

Made With Love

Dear Savannah,

Today is Valentine's Day. I have so much love for you I can barely contain it all. You are perfect, precious, sweet, beautiful, and loved. You represent happy in my life. You make me feel happy. You make me feel needed and loved and I demonstrate the need and love I have for you daily.

I thought today might be the perfect day to share the article that was posted in The Hairbow Company's mini magazine Ruffles that they include with orders. I'm a huge fan of The Hairbow company for a few different reasons. Their products are adorable. The also have fabulous customer service. The also believe in children of all abilities. They not only published my article and barefoot sandal tutorial,  but they are now using models of all abilities in their advertising. It's amazing.

I wrote to the company about Changing the Face of Beauty. I have been following along Katie Driscoll and her partner Steve and their amazing and successful campaign since we met Katie in San Diego for the InfAntino/Step 2 Photo Shoot with the amazing Kelle Hampton. It was an experience I will never forget and really my first steps of inclusion. I gave The Hairbow Company the contact info, and sure enough, The Hairbow Company is one of 37 who have agreed to use models with disabilities in their advertising in 2015. I love seeing all of this take place.

http://www.thehairbowcompany.com/changing-the-face-of-beauty.html#.VN9udZgfXtE.

Her is the article and photo that was posted Ruffles




Made with love:

It all started as a little girl. My family owned a department store. Having a very close relationship with my mother and sister, I always dreamed of having a daughter. The minute I found out I was having a girl, my crafty side jumped for joy. I first chose a shabby floral room decor in aqua and pink. My first real project, I decorated a plain lampshade and completely covered it with miniature rosettes. Similar to what you may see in a Pottery Barn catalog, but budget friendly and made with love. Everything I did, I added a loving touch to her bedroom.

As I organized her room, I daydreamed about all things girly that would fill my daughter's life: dresses, skirts, bows, shoes, ruffles, leggings, in all the most beautiful colors. I couldn't wait to meet my daughter. We would read, craft, have tea parties, play with dolls, paint our toes, dance, sing, cook, and love life. All things I enjoyed with my mother and sister in my childhood. We would be best friends.

It seems that you always make your own plan and you forget, God already has a plan for you. Shortly after birth, Savannah was diagnosed with Hydrocephalus. At just one month old, she had brain surgery. It was extremely scary as a new mom. As my love was growing and my worries too, it never once stopped me from playing "dress-up" with my new, tiny and delicate, baby girl. It started with an obsession with bows and headbands. However, my favorite, barefoot sandals on her tiny little feet. I loved to add sweet girl accessories to her outfits.

Well, at only eight months old, Savannah decided to add her own accessory, pink glasses. Savannah was diagnosed with cortical visual impairment and is considered legally blind. It's a neurological processing visual impairment. It's extremely complex. I never once thought about how much vision impacts our lives, but it is an extreme motivator in all aspects. I do my best to give her all I can, both emotionally and physically.

My bow obsession continued to grow. My crafty bestie started making bows for her daughter and I followed in her footsteps. I loved the idea that I could make a bow to match any outfit, my own creation made with love. Each bow was different in color, size, shape, and style, just like every child.  Bows turned into headbands, barefoot sandals, birthday shirts, Halloween  outfits. Do I sound pretty talented right now? Well, I'm really not. I like easy crafts. Crafting is something I have always had a passion for doing, it just became a new outlet for me. A little mommy time to decompress from the never-ending doctor appointments, therapies, and stressful worries associated with Savannah's condition.

Raising a child with disabilities has truly blessed me. At three years old, she brightens my every day and makes me smile. I feel strongly about giving her all the same privileges I had growing up- experiences of all kinds, a beautiful wardrobe complete with bows, but most importantly, love. Everything I do, I do out of love for her.

My love for Savannah has inspired me to advocate for children with special needs. I want the world to see the beauty in my daughter and how raising a child with special needs is truly a beautiful thing. When people look at her, I want them to notice her beautiful eyes, her thick long lashes, her perfect lips, her rosy cheeks, her gorgeous dark hair, her infectious smile, all things that make her beautiful. My hope is that seeing her photo or reading her story will help others accept all children of all abilities. After all, she is a child like any other who is fiercely loved.
I love you so much!!

Love, Mommy

Wednesday, February 4, 2015

Endearing- Special Needs parenting

Dear Savannah,

I truly cannot tell you how thankful for you I am each day. Sure, some days are harder than others but I try my best to make you feel so happy and so loved everyday. Your personality is wonderful. Your little giggle from the back in your car seat on my way to school, well, it makes my heart melt.

On our way to School, just before the silly giggle party.


To start the week off, we had two extra days with you at home. We have had so much snow. Last week, 27 inches and this week, another 16. It doesn't surprise me that you love the snow because truly, you just love to be outdoors. You loved your ride around the snow covered streets in our sled. We adapted it by adding Velcro straps from your chair made at Perkins and your old boppy pillow that holds so many close memories of nursing you. Nursing was never easy for you. You have always had a hard time with thin liquids. However, we did share this bond and you enjoyed my milk for almost a full year.

I follow a website full of wonderful articles in Special needs parenting. It's called, The Mighty. Last week, the asked for a one word description of special needs parenting. I commented with the answer endearing. You have all qualities to make you lovable, so extremely lovable. You are endearing and our journey is truly amazing. Easy, far from easy but I feel so lucky God chose me to be your mommy. The Mighty asked for me to share a photo. Sure enough, you were featured in this article. I love sharing our journey. I want to help others understand that a disability is just that. To me, diability should include warrior in the definition. You are not less than anyone else. We all posses unique qualities. I love all of you, I always will.


http://themighty.com/2015/02/this-is-what-it-means-to-be-a-parent-to-a-child-with-special-needs-in-one-word/

More good news, it looks like Daddy's health will improve. They feel that a virus attacked his heart and it will all resolve. Praise the Lord. You are currently healthy  after spending almost the entire month of January with a cold, a nasty one too. My biggest concern at this moment is how are we going to get enough iron into your little body without causing other issues. You are extremely iron deficient. Your diet already consists of greens and hamburgers. You need to supplement 40mg a day. That's a lot. we are already seeing some side effects so I plan to call your pediatrician tomorrow. You also have some strange bumps on your back.

Tomorrow, we have an eye appointment and a land evaluation for Aqua therapy. I'm so excited to start this again. You love the water, like you love outdoors. However, music and mommy still take the cake. Peaceful dreams love bug.

Love,
One Very Lucky Mommy