Princess Shoes

Julia wants to wear princess shoes. You know the plastic, high heel dress-up kind. We must have ten pair at our house. We have Ariel, Cinderella, Snow White, Barbie. You get the idea. Gracie wore them. Maggie wears them now and Julia is obsessed with them.

The problem is that princess high heels don't fit over tennis shoes and AFOs. She can get one sort of half way on and hobble around in it. She was happy with that for awhile, but not anymore. She wants to be able to walk around in princess shoes and I can't convince her that it simply won't work for her. Have I mentioned that she is a bit strong-willed?

This obsession has been going on for about three weeks. She has added princess shoes to her collection of sleep must haves along with Mickey, Minnie and her Pillow Pet.

I have tried distracting her with other toys and hiding the princess shoes, but nothing has taken her mind off her desire to wear those glamorous high heels.

In the grand scheme of things, I know that not being able to walk in princess shoes is not a big deal. I try to have a glass half full attitude and be grateful that Julia can walk at all.

But, yesterday when I was futilely explaining to Julia why the shoes won't fit her and are not safe for her to walk in, I got glimpses of the future.

I started thinking about having to explain to four-year-old Julia why she doesn't go potty like her sisters and telling six-year-old Julia that she can't play soccer because she has a shunt. I started wondering if we will be able to find ballet slippers and tap shoes that fit over AFOs. The thought of all of the hard conversations that Julia and I will have as she grows hit me and for a moment it was hard to not let "life isn't fair" and "spina bifida really, really sucks" feelings overwhelm me.

I have to remind myself that today it's just princess shoes. Julia is happy, healthy and thriving. I need to take one day at a time and not look too far into the future. I have to remember that her attitude about spina bifida is going to reflect mine so I need to focus on what she can do and not the things she can't.

But, I give myself permission to be sad sometimes. I still mourn for the life that I imagined for Julia during the first 18 weeks of my pregnancy. The life that she will never have. A life that doesn't involve a shunt, catheters, daily medications, hospitals, therapists, specialists and special shoes. Sometimes I wonder if the grief will fade. I wonder if I will ever stop hiding in the bathroom to cry over plastic princess shoes.

I am thankful...

I decided in honor of Thanksgiving our family would tell one thing that they are thankful for each day of November. Each night we sit together and take turns sharing one thing we are thankful for. It can be as simple as the beautiful fall weather or one day Julia was thankful for "Mickey Mouse." Gracie and Maggie have both said that they are thankful for their families and teachers and school among other things. It has been great. I highly recommend it as a family activity to teach children about giving thanks and blessings.

Today as I was thinking about what I am thankful for, I decided that I would share it outside of the family.

I have had the privilege to meet many Spina Bifida moms through chat groups and blogs and they all have a similar story of the way that they were told of their child's diagnosis.

Misinformed doctors are providing expecting parents with scary and inaccurate information and then offering, often encouraging, the option to terminate the life of a precious child.

More than half of babies diagnosed in utero with spina bifida are terminated.

This statistic weighs heavy on my heart.

What I am thankful for today and everyday is that on March 12, 2008, Julia Catherine completed our family.

He said that there was something "wrong" with her. He said she had the lemon sign. He said that she had a chiari malformation of her brain. He said that she had hydrocephalus. That there was a large defect on her spine. That she would never have bowel or bladder function. He said that she would probably never walk. She would face a lifetime of painful surgeries and we needed to make a "choice."

He didn't say that she would take my breath away the very first moment I saw her...

that she would be beautiful...

that she would be a fighter...

that she would be perfect...

that she would be brave...

that her smile would light up a room and melt our hearts...


that she would be smart and funny and that her sisters would LOVE her...



that she would be determined, tenacious and spirited...



He didn't know that we needed her to make our family complete...

Doctors are not giving parents both sides of the story. Our life with Julia is a beautiful life. I am thankful and blessed to be Julia's Mommy. Choose life.

Jogging for Julia

Dear Friends,

Wade and I are blessed and excited that our brother-in-law, Jimmy Holbrook, is running the White Rock Marathon this year in honor of Julia. The White Rock Marathon benefits Scottish Rite Hospital for Children.

Julia has been a patient at Scottish Rite since birth. We owe so much gratitude to the amazing doctors, nurses, therapists, orthotist and countless others on staff at Scottish Rite Hospital for the outstanding care that Julia has and continues to receive.

Scottish Rite provides care to Texas Children with orthopedic and neurological impairments free of charge. Scottish Rite Hospital is fully funded through donations.

If you would like to make a donation and support Jimmy's efforts to raise money in honor of Julia for Scottish Rite Hospital, please follow the link below to his fundraising page.

http://www.active.com/donate/tsrh10/jholbrook

Thank you so much for your consideration.

Love,
Lauri, Wade and Julia Catherine

Trick-or-Treat

There is a magical moment when the light bulb turns on for a two year old on Halloween when it all makes sense. It's usually about the third house that they realize the awesomeness of trick-or-treating. I have witnessed this magic moment three times now and sadly, since Julia is my littlest princess, that's the last time I will watch this little moment of childhood bliss through the eyes of my own child.

It is one of those precious moments of parenting perfection that you never forget and never get back.

Every time we walked away from a house on Halloween night, Julia would say, "I want to trick and treat again!" She had the same enthusiasm at every house we went to.

I was even more grateful for the fact that while trick-or-treating through our neighborhood, Julia refused to hold my hand as she chased her sisters down the sidewalks insisting, "I can do it by myself!" She was exactly right, she could! While I would have loved to hold her tiny hand, I am beyond blessed that she didn't need me to.

I think God knew exactly what he was doing when he gave Julia two big sisters to chase. Keeping up with them has proved to be her best therapy.

Unfortunately, we didn't have a great October at the Kennedy Casa. We were a sickly bunch. But, this last weekend everyone was feeling better. We made it to the Dallas Arboretum to see the "pumpkin houses," to church to see Gracie sing for Choir Dedication and we had a fantastic Halloween. It was a beautiful weekend and I am thankful that we are all healthy again.

I need to say thank you from the bottom of our hearts to Ashley AKA Aunt Tinky, Emmy and Memaw for the helping hands and dinners this month while I was recovering from surgery and the girls were sick. October was a bumpy ride for us and you all made us feel loved and supported.