Wednesday, December 9, 2015

I Don't Like Today!

Today was hard. Really hard.

Sophie had her appointment to pick up her new braces that go up the calf as well as her new medical helmet. Both are needed. Both are reminders of how hard life can be.

Since October Sophie has started having a new type of seizure. She is having, what we believe, are atonic seizures. She is shaking, going limp and falling over. Hence the reason for the helmet. Some days Sophie doesn't have any, some days Sophie has upwards of 15. We have been increasing medication and introducing Kolonopin as her rescue med. When they first started we were only giving the med to her once and it stopped them. Now, we have to give it to her twice and some times the seizures stop. These types of seizures only last for 5-10 seconds but can be very dangerous due to Sophie falling. We have done a 6 hour EEG and the doctors didn't catch anything the day we had it done.

Seizures suck! Everything else Sophie deals with i can fix or make better. Seizures I can't. I watch her like a hawk almost feeling like I can't take my eyes off of her. When she is in her walker it terrifies me even more. Fear has a hold my heart and the grip is strong!

That wasn't the hard part about today though. Sophie's new white braces with hot pink straps (good work daddy) did me in. But it wasn't until we went shoe shopping that it hit me. And it hit me hard.

Sophie and I stopped in at Tilton's in Tecumseh, That's the place to get shoes. Great customer service, good quality choices for shoes and reasonably prices. I was told today by her doctor that we would need to go up about 1 shoe size.

 Ha!! Let's try 4 sizes.

Add in Extra Wide Width

Any shoes come to mind? Nope, me neither! There were no shoes for Sophie. I never would have imagined that I couldn't go in to a shoe store and walk out with a pair of shoes for my child. I felt defeated. Sad. Angry.





When we found out we were having a girl I would day dream about clothes and shoe shopping, just like I used to do with my mom. She would have the cutest clothes, in all shades of pink, and even cuter shoes. They would sparkle, but not light up unless she asked for them. She would have the cute boots and flats that are all in fashion. And when I would find the perfect Christmas Dress she would have the PERFECT PAIR of dress shoes to match.

Today those dreams were shattered. Today left me heartbroken. Today, my dreams died again!

This seems to be a reoccurring factor in our lives.

So, what do you do? For me, I put Sophie is the van and cried all the way home. I cried for the lack of options we have and will continue to have. I cried for the constant reminder that my daughter is different. I cried for all of the things she won't be able to wear or do. I cried for her future, our future. I cried because I felt like a fool for crying!

I share this because its my heart. I am not asking for sympathy or pity. Please, don't pity us. I have a beautiful blessing I call Sophie but some days are just hard.

I don't have these days often and I am thankful for that. When they do come they are hard, and they are ugly and I become extremely vulnerable.

I don't like vulnerable.

I don't like today!


2 comments:

  1. Been there and dealt with it after years of anguish. The braces never 'fixed' Jillian's foot and ankle problems. One day, I decided to put little pink shoes on her with her Easter dress, for Mass and all the photos and NOTHING bad happened!! After that, she wore cool shoes for special occasions and pink work boots with jeans. She survived and I did too!! Put those pretty shoes on Sophie every so often, just not when her therapists will see her. Breath deep and enjoy journey. It does get easier eventually.

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