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!


Saturday, December 5, 2015

Dear Shane

My son shared with me yesterday morning about girls in his class, the Freshman class, that are taking photos of themselves and sharing them with their boyfriends. You all know what pictures I am speaking of. Shane and I talked about how it is NOT good at all, how if anyone sends anything to him whatsoever that we need to know immediately.

Because of the opening he gave me, Shane and I also had the opportunity to discuss how he needs to respect girls and how the girls need to respect themselves. I have heard Shane share multiple times how so many of the girls in his class are all about trying to be "sexy" and "hot" and how they want to be desired by the boys. Really? And the boys, oh the boys! Sex is always on their minds and their hormones are raging and they don't have anyone to guide them. Because it has always been ok for boys to be "players" and to "hook up" with as many girls as possible. These 14 year old kids are in for trouble and we, as PARENTS, have failed them!

As parents I truly feel we have taken a backseat to raising our children. We want society to do it. We want the schools to hand out condoms and have the sex talk with our children. We want the police officers to be feared and respected but the moment they execute their authority to our children we want to blame them! We want celebrity hook ups and break ups define relationship statuses. We want social media to be our source of information and the place we look to get parenting advice! Seriously parents, wake the hell up and start raising your children instead of being friends with them.

Because of the choices and decisions we have made, as parents, we are now seeing those come to light in the lives of our children. Our sons have anger issues and moms fear their sons will hit them because that's what they learned from their dads or moms boyfriends. Fathers are not around and mom is working two jobs just to make ends meet. Because of that our children are home alone, no supervision. Our daughters have self image issues because we let them read Cosmo and watch all these "Reality" tv shows where all these women are fake. They have daddy issues because dad is either not in the picture or they don't want to be involved because that's moms job. Dad...show your daughter how a woman should be treated. Start with your wife! They have no idea what real beauty is and how it comes from within because we as MOMS have failed them. 

Don't get me wrong, this isn't every family, but many. This might offend you, but then again, what doesn't offend people anymore?

What I want to say to my son that I always don't know how to say:

Dear Shane,

I love you. I love how your hair starts to get long and then starts to curl on the ends. I love your sense of humor and at times I don't find you funny! I love how you love your sister and how you would do anything to protect her. I love how you have a good heart and want to do good in this world, but I do understand that you are receiving so many mixed messages on how you are supposed to be as a young man. Please, if you don't listen to anything else I have ever said to you, listen to this.

I know you notice girls. I know you notice boobs. I'm not stupid and I am very observant. I know you are confused on what is going on with your body and the bodies of the girls around you. I know you will face temptation. I know you know how your dad and I feel about sex and how we want you to wait until marriage. We have talked with you many times and shared our reasoning why we want you to wait. I know you don't like that we make sure we know the parents of any of the kids you hang out with and that we expect the same of the people that want to hang out with you.

We know you want your independence but you aren't ready to have it all at once. You still make impulsive decisions and as your mom, and dad, we have to protect you and lead and guide you. We won't let girls in your room because there isn't anything up there but a bed and your clothes. We won't let you be behind closed doors with a girl either.

 We will let you invite her over to have dinner with us at the kitchen table. We will let you sit on the couch, with NO blankets, and watch a PG 13 movie. Lame, I know but remember, we are your parents, not your friends. Don't tell her you love her because you have no idea what true love means. You can like her a lot, I hope you do.

We will drive her home, you can come with us and walk her to her door and thank her and her parents for letting her hang out with you. No, you don't need to kiss her goodnight, but you can give her a hug! Then, when we drive home, I am going to ask you how your evening was. I am going to ask if you had a nice time. I expect you to answer because in this family we have conversations. I am sure you will be texting her as soon as you are home but that texting will end at 10.

When you turn 16 and have a license there will still be rules. You will have a curfew. You will want to have your official first date and I am going to cry. I hope you pick a girl that is smart, kind, funny and nice to other people. I hope you like her because of her personality and not because you think she's "hot". Pick a girl different than the ones you are disgusted at for sharing inappropriate pictures of themselves. Shane, I hope and pray, I pray for you often, that this girl will be worth it. On this first date I hope you don't expect her to be all sexy and made up. If you ever tell her she is sexy I am going to smack you and I hope she does too. I hope she's the kind of girl that doesn't want that either. I expect that you will open and close the doors for her, pay for the dinner and a movie with money you made from a job you have. I hope that you hold her hand and are proud to be with her. I hope that she gives you butterflies just by holding her hand. After dinner, splurge for dessert. It will be worth it.

When you are at the movies on the second part of your date and the lights are off I pray you don't try to get "fresh" with her. I pray you respect her. I pray you have boundaries you set for yourself before the date and that you keep those in place. And when you are in the car driving her home I pray those boundaries are still there. Shane, you will be tempted to do things you shouldn't be doing. Resist those! It will be ok to kiss her goodnight, but don't shove your tongue down her throat and keep your hands off her boobs and her butt! Jesus is always watching. Chances are, so are her and your parents!

Sex, the dreaded three letter word that changes your life forever. Please wait! Don't give yourself to a girl when you have the woman of your dreams waiting for your wedding night. I pray she is saving herself for you as well. Shane, sex is so personal and so special. There is a huge emotional attachment to it and please don't be the guy who takes it from a girl and disrespects her with it. Be the man that waits because there is NOTHING wrong with waiting, despite what other 15 year old boys are saying and doing. You might love this girl and think the way to show her is to have sex. Honey, there are other ways to show her this. We can talk about all the different kinds of ways. Yes, I hope we do lots of talking about girls and life.

When you get invited to a party with your friends I hope you are responsible. If alcohol and drug show up please come home. The seniors might tell you it is cool and fun. I promise you it isn't cool, or fun to puke your guts out. Believe it or not, worse things can happen than puking. If you do decide to drink please call me. I will be there. No questions asked.

Lastly, please know that no matter what you do in this life there are consequences. Good and bad. We all have choices and at times we are going to make the wrong ones. We learn from those mistakes, hopefully, but I pray you don't have to make them. Your father and I love you and always will. We are always here. Always.

Love,

Mom