The Dog Ate Her ... Shoe?

That's the only thing I can come up with at this point. I've searched high and low, inside and outside, under the couch, in the car - everywhere a little toddler size six shoe could possibly be but nothing, nada, zilch, zip.

So what's the big deal about a shoe? Well, a lot actually. Because of Raquel's low muscle tone, she is a very clumbsy walker. All the cute, clunky shoes - that I love and wear - don't work for her because she trips easily. She needs simple stuff. And simple is not always that easy.

For starters, like any shoe, it has to be comfortable. But Raquel can't tell me if her shoe hurts - and because of her sensory issues, she has a pretty high pain threshold - so I only find out if a shoe is not working by seeing blisters or sores on her feet after I've taken off a new pair. The shoe also has to be convenient, meaning velcro and not a bunch of laces because they constantly have to be put back on because she takes them off. The P.E. therapist prefers certain styles, and I've payed a pretty penny on Converse shoes, but those don't work for me on a daily basis. In fact, I would typically pack those in her backpack and tell the teacher to put them on for therapy. Again, I need to pick my battles here and fighting to put shoes on first thing in the morning is definitely not one of them.

I finally got the health form signed by the pediatrician stating that Raquel has nut allergies and needs to have the Epi-Pen at the school nurse's office. Why that took 4 days, no idea. Then her new teacher got sick and then had an IEP and I didn't feel comfortable putting her into her class with an unknown substitute. The teacher didn't like that idea either. So today was going to be her first day back to school ... until the missing shoe came in to play. By the time I was done searching, her class had already started, I was beyond irritated on top of not feeling well in the first place, and Mike just had to get to work.

By no means do I want you to think that my girl is shoe deprived. I would never allow that, being the shoe freak that I am. She has plenty - just ones that aren't suitable to wear to school in a new environment and walking around unfamiliar things. We prefer to have her barefoot to prevent her tripping and we introduce new shoes gradually, but this is not an option in class.

Tomorrow, she will start her new class - in an old pair that I'm not real happy about - and then I will continue to search for some new ones. It's always something, I guess...

A Very Special Wedding

One of the hardest things (for me) in dealing with a child who has special needs is finding enough time - and energy - to effectively parent Gabby. Even though she absolutely cherishes Raquel and probably wouldn't change a thing about her, I often feel that she gets the short end of the stick. I am always trying to think of ways to make her feel not only loved and appreciated, but also ways that she can shine on her own so things aren't "always about Raquel." (Yes, she does say that...)

A couple of months ago, Mike's cousin, Morgan, called and asked Gabby if she would be a flower girl in his upcoming wedding. Besides being honored that he thought of her to do this, I knew this was my golden opportunity to make her feel like a million bucks. Even though she likes to play in the dirt, Gabby is definitely all girl - it's all about the pretty dresses & shoes, hats & purses, glitter & make up, etc., etc. In fact, she can be too girly for me at times. But I promised myself that I would go overboard with the wedding experience and let her enjoy every moment.

I have to say that she definitely enjoyed it, but it wasn't exactly how I had planned. When I took her to David's Bridal to get fitted for her dress, she insisted that Raquel come with us. After not being able to convince her otherwise (over the course of several days, mind you), the three of us went. Gabby had more fun watching Raquel chase after herself in all the mirrors than she did getting pampered by the bridal staff. She cried when we left her at my in-laws to go to the rehearsal dinner because she wanted her to go with us, and she was very sad to leave her behind to go to the wedding because she wanted Raquel to watch her throw the rose petals. I can't tell you how many times she asked me, "How do you think Raquel is doing?" Even when out and having a good time, her thoughts always come back to Raquel. I think that is very sweet, and it also says a lot about their relationship.

It also made me realize something: I've been trying too hard to make Gabby feel like she has a "normal" life, if that makes any sense. This IS our normal life. Raquel IS her reality and by me trying to act like it should be different must be a bit confusing. Gabby knows Raquel is special in her own way and has certain limitations, but it doesn't change the fact that she's her little sister. And she loves her little sister more than anything. Instead of trying to shelter her from the situation, I've decided that I just need to acknowledge the little things more. For instance... She just handed me a note saying that I'm arrested and owe her $1,000. I asked her why she was arresting me and she said it was because I stole a pair of yellow shoes. I said, "Yellow?" and she said - "and they were the wrong size, Mom." LOL But she was beaming while "arresting" me and was happy to be the center of my attention, even if it was only for a short time.

The wedding was absolutely beautiful, and Gabby was definitely pampered. It started with getting her hair styled by Kelly at Kids Kuts - my very favorite place to take her. Kelly is awesome and makes it such a great experience (because she "just loves hair!").



I love watching Gabby's eyes get as big as silver dollars whenever she pulls out the hair glitter. She knew Gabby was getting ready for the wedding and made it extra special for her. Thank you, Kelly! Because of all the gel and goop you put in there, her hair didn't budge one bit and looked just like when we left you, all day, all night - and in the morning, too. :-)

Once we got to the winery for pictures hours before the ceremony, Gabby started to really get into the wedding party mode. She got dressed upstairs with the bride and bridesmaids, drank apple cider from champagne glasses, and was secluded from everyone with the rest of them 30 minutes prior to the big event. I didn't even see her at this point. But once the wedding started and Morgan stood on the platform in front of us, he called to me and said that Gabby was absolutely glowing. I think she redefined the word "glow." I was so proud of her for doing such a great job.







Thank you, Morgan, for giving Gabby such a special role in your wedding. We really appreciate you thinking of her. And thank you, Karin, for allowing her to be a part of the whole experience. It's something that she will cherish and remember always. We wish you much love and happiness in your new life together.





========================================================

SIDE NOTE: This morning, Mike & I met with the school district, teachers, and therapists. After 3 hours of discussion, we have agreed to have Raquel resume school at Rock Springs in the regular special education class - with walking and talking kids. Our new Special Ed Program Specialist seemed genuinely concerned about the district not providing services. She also was very understanding as to why I had made the decision to keep her out of school. Two weeks after she starts, we meet again to make adjustments and put together a behavior support plan (BSP). As soon as one form gets completed by her pediatrician, she can start. I'm thinking right now that will probably be Wednesday.

A Post From Mike's Cousin

My name is Sandy and I am Mike's cousin from Buffalo. I asked Nita if I could make an entry on her blog.

From the end of August into the second week in September, my boyfriend, Dennis and I went out West for a vacation. While we were there, we visited quite a bit with Mike, Nita and the girls. I had last seen Raqi when she was 3 months old. She was adorable then and is so much more now. She has a smile that will melt your heart. To be honest, I was leary about going as I didn't want to upset her or throw off her routine.

Well.....when we first pulled up, Mike was holding Raqi outside in the driveway and when she saw us she started bouncing up and down in his arms and clapping. I realized then that my worry was all for naught. Raqi came right to me and gave me lots of hugs and kisses. I would like to think she remembered back to when she was a baby and all the cuddle time the two of us had shared.





It took her a little while to get to where she would curl up with Dennis but she eventually did. We left that evening and went to Las Vegas. While we were there, Dennis won a HUGE ball for Raqi and Gabby. Needless to say, when he gave it to them they just loved it. It was big, bright and bouncy – perfect for Raqi.

We had many fun times during those two weeks even though we were there on and off – we took a cruise and Dennis had a Navy reunion as well, so we were in and out. ….Along with the good times, there were some bad ones, I will admit. I shed many tears watching that sweet little girl get so angry and upset as she was so frustrated because she was trying to communicate a thought or wish to no avail. She tries too hard to get across whatever is on her mind, and when she can't - unfortunately she lets people know, as we all do at times.

But even when she is very angry or frustrated, I see her look at the person she is trying to communicate with: Mike, Nita, Gabby and even myself and Dennis, with true love and tenderness in her expression. Raqi stares you right in the eyes with such conviction and intensity she seems to be apologizing for her temper. She doesn't mean to hurt anyone at all. She is looking to all of us for help and understanding. We have to relay her message for her until she can.

I will admit with her limited vocal skills she can be a handful. I don't know how Mike and especially Nita do it day in and day out. But they are absolutely wonderful with her. Nita is never tiring – juggling work, a home (we all know how time consuming that is in and of itself), making sure Gabby Girl gets her own time, and trying to fight the system to get the help for that sweet innocent child. You have my sincerest admiration and respect, Sweetie. I don't think I would have the strength to do what you do day in and day out. In fact, I know I wouldn't. You are a very special Mom.

You all keep up with the amazing job you are doing. Mike - be strong and keep loving your girls. They need you. Gabby Girl – stay sweet and be the best big sister you can. Raqi – hang in there, baby. You will get the help you need. Mommy and Daddy will see to it. Nita – Don't give up. You keep fighting the system until you get someone to help you. You are her voice; speak it loud and strong. If you need help call me. I'll come and help!!!

You are my Heroes and I love you all very much.