Tuesday, January 25, 2011


"Extremity - an intense or the utmost degree"
..............................................- via Merrian Webster Dictionary

As a mom, I find myself constantly in the extremes. I don't know if this is what all mothers feel, but as a mom of a special needs child I am forever snarled by extremities. We have all heard that with great difficulties/obstacles/hardships comes great reward - and as I continue this journey, I find that it is so true. With the greater struggles comes the most prized moments of joy and relief. I remember that when my mom struggled through her battle with breast cancer, that when she had a "good" day it was really a good day. Most often we don't realize just how great the small things are until we have walked through the shadows of despair. Thank you God for showing me your Glory through extremities.

Life has been crazy busy lately - is this what I am to expect as time continues? I have fantasies about a Norman Rockwell painting where everyday life just seems like a lazy Sunday afternoon on a porch drinking lemonade. Did this life ever really exist for anyone or was it simply Norman's fantasy as well?

I remember as a child hearing old people (or so I thought at the time!) talking about how time flies. I had no clue that they literally meant that it goes by so quick that you don't know even what you did or had time to do. I am still trying to process that it is already the new year and that Kendal will be turning five in two months. Five years old? How is that even possible?

I remember wishing away the different times we went through especially trying times, but even now I long to get some of that time back. I see my 90 year old grandmother and see that all she does now is look back at the memories of her life. Does she look back with regret of things she did or did not do with her life or complete happiness and gratefulness? I don't want to look back wondering why I always thought next week/month/year would be so much better than today. Instead of wishing times away this year, I truly want to embrace time despite my hatred for it's speed. To actually swallow down the hard times a little slower so I can be more grateful during the joyful times.

All that being said....the last few days have been a struggle for me. Kendal is coming up on a life stage for going to Kindergarten and it is looking as though the school system will probably not recommend her to start this year. This is just a strong hunch at this point as her IEP to determine this will not occur till April, but based on Kendal's level of skills (mainly self-help), I do not expect her to start school this year. For those that don't personally know Kendal or I guess any other AS kids, Kendal cannot do alot of tasks on her own. And when I say this I would like to add a DISCLAIMER........Kendal is my child. She is beautiful, incredibly smart, and full of love and life. I do however know her current limitations. I am not insulting my child's intelligence or abilities by pointing out these limitations or in anyway saying that these limitations won't be overcome tomorrow.......END OF DISCLAIMER. With that out of the way, small menial tasks such as drinking out of a regular cup, using the potty, and following instructions of getting in line and sitting down (in a classroom setting) on her own are impossible. I know these things - I am her mother. Still, to have someone else point out these issues is incredible infuriating. I know this makes NO logical sense but as a mother there is nothing more personal than my child. And sometimes facing reality is just something I don't want to do.

An example: I recently called the ballpark to look at placing Kendal on a T-Ball team. I feel like we need to expose her to everything else a "typical" child experiences. The ballpark informed me that they have a special team for special needs kids designed to be appropriate for their particular skill levels. Logically this sounds like a great program. But I didn't want to hear that Kendal playing on a regular team would not be advised based on her skill level. I want my kid to be like everyone else and playing with the "regular" kids. I don't want her segregated, and yet I know this is just the beginning.

I know that Kendal will always be drastically different from her peers. I know that she will always be somewhat of an outcast throughout her life with people that don't intimately know her. This is not being said to be ugly or mean, but having a child that can not speak will greatly inhibit her from making friends and building relationships. I HATE this ugly truth. I HATE that most people won't know how cool Kendal is. I HATE Angelman Syndrome and how it has stolen my daughters voice. I hate, I hate, I hate.

Again with the extreme feelings. Being so filled with hate over how this disorder has robbed her and yet being so thankful and grateful to God that she is healthy and loving and happy all the time. Trying to accept that she is how she is and that she will never be "normal" is a constant struggle for me. But for me now, I will keep concentrating on the moments of extreme pleasure and joy. I will try to push away my hated for AS and intake the experiences (good & bad) that come along with raising a special needs child. Everday is a new day with new dramas and luckily, God is there for me every step of the way.

Sunday, November 21, 2010

Early Christmas for Kendal!

Before going into this post tonight, I wanted to say a big "THANK YOU" to one of my favorite people - Ginny (withholding your last name to protect your privacy!). Not only is she absolutely beautiful inside and out, but she makes everyone else feel that way too. Thank you, Ginny, for always checking my blog. Sometime I think the only people that read it are me, James, and my parents. I truly appreciate the feedback - but most of all, your love and support.

And now onto the post.....

You know when things just seem to fall into place out of the blue? That's what this post is about.
Kendal loves being outside. It doesn't matter the temperature, inclement weather, or sickness; this child loves being outside. And for those that know Kendal, I love her being outside too! In the house, nothing can keep her attention and she is constantly looking for something to destroy. She has sprouted up so much this spring/summer that she now requires bigger playground equipment than the ones we had before. She had long since fallen completely in love with a teacup merry-go-round at her daycare. Throughout the next several months I searched the web and Craigslist endlessly and could find anything like the one at the daycare for under $850. Obviously, this was not an option. I grew tired of the search and planned on just getting a small swingset next spring.

After not looking for about two months, I pulled up Craigslist in boredom and lo and behold, I found a teacup merry-go-round just like the one at daycare. To beat all, it was located within a hour drive. The seller also listed a slide but I was so eager about the merry-go-round, I didn't pay attention to anything but the phone number to call! I agreed to meet the gentleman the following day (Saturday) to look at what he had. That evening, Friday, I stopped by my parents house for a quick visit and told them about the exciting news (they knew I was looking for one). After talking briefly about the seller, come to find out, my father personally knows him! How bizarre is that???

To make a long story short (because I tend to be exceptionally long winded - I can thank my mother for that one!), Nana and Papa helped purchase both the merry-go-round and slide at a great price. Both pieces had been sitting since last summer, and the merry-go-round was inoperable. My dad, the perfectionist/workaholic, would work all day long and then come home and immediately start working on the merry-go-round. On the third day, I brought Kendal by to see her merry-go-round and I was completely in shock. It looked and operated like it was brand new!!! I don't know how my dad did it (I felt like Santa really had a hand in this!), but I do know that it was just one way of showing Kendal how much he loved her. That's all that mattered to him was getting it perfect for her. I felt so much pride and love for my dad that night. He continues to amaze me.

Friday, November 5, 2010

Fall Carnival

This was another action packed day for Kendal. I picked her up from school and took her to her daycare to enjoy the fall festival with games, face painting, pony rides, and more. It was a little chilly but it didn't stop Kendal from enjoying all there was to offer. As you can tell, she especially liked the pony ride!

Wednesday, November 3, 2010

Halloween 2010

I can't believe Halloween has come and gone already this year! But nevertheless, Halloween was a beautiful day. Me and Kendal went to church in the morning and then took a nap shortly after. We got to play outside for a while and then it was time to wake up James and start getting Kendal ready for the trick-or-treating. While I took Kendal out this year, James stayed at home, made chili, and passed out treats. What a great day!

Friday, October 29, 2010

A Simple Reminder

This morning I got a simple reminder that I can't do it all. That as a mother, a wife, a full-time employee, an employer, and a friend, some things will not get done. Some things will fall between the cracks. Some things are completely forgotten. And some things just aren't that important. For those that follow my blog, this is something that I have struggled with especially since Kendal was diagnosed.

For some reason, since Kendal is not "typical", I have strived to excel in being an excellent mom to the outside world. I want everyone (except in the confidence of family & friends) to think I have it all together. That despite all my responsibilities, I can still manage to make cute little valentine treats for the class. That I manage to bring treats for parties, gifts for teachers/aides/therapists, and that I make monetary donations to help with activities. What a joke I am! Who am I kidding?

I don't have it all together and I struggle as much as any other parent. Why must I feel like I have to have it all together and be perfect? Am I that desperate to care about what others think of me? Is it my subconscious telling me I had something to do with Kendal's development of her disorder and that I must try to make up for it? Is this something that God is trying to correct in me (I sure hope so!!!) and teach me that my purpose here is not to care how others judge me?

What started this was what happened this morning. I had gotten up extra early to make some treat bags with candy and Halloween favors for the kids in Kendal's daycare class. After I made the 20 bags, I rushed to pack her snack bag, fix Kendal's breakfast, pick out clothes (& extra set), pack Avon orders to deliver, pack her book bag, and finally get Kendal changed, hair up, fed, and out the door. When I got to school and was walking Kendal to her classroom, it was then that I discovered that today was dress-up day and Kendal was the only one that wasn't in costume. I felt awful. Here I had done everything (I thought!) and still managed to isolate my daughter by making her different. When I got in the car I cried because I realized just how crazy my life was and just how lost and behind I always feel in accomplishing things. I can't do it all. It's okay that I can't do it all. Some things just aren't that important. And yet, I collapse in a depression when I realize again that I fall so short of what it seems like other parents can accomplish. I truly feel like a failure at times.

I know this probably seems over dramatic, but this blog is meant to be my platform to express my honest feels - the good, bad, and ugly. Being a mother is the hardest job I could ever imagine. Some days your heart explodes with the sheer love you feel for your child. Other days you fantasize about running away.

The fact that Kendal didn't have her costume on probably meant nothing to her, but to me it was a simple reminder that I failed again.

In addition, as I write this, I just remembered that I also forgot the cubed cheese for the party today that I made an extra stop at the grocery yesterday evening to buy. Just another lapse on my part.

Does anyone else struggle with these issues as a mother or am I alone in trying to create some fantasy of perfection?

Tuesday, October 26, 2010

Bella Bash 2010 - Melinda Doolittle debuts Let Love Do What It Do

This was a great song that Melinda Doolittle wrote! The Bella Bash was great and supports such an amazing cause.

Video w/Interviews of the Bella Bash

Nashville Country Club: Danny Gokey & more at Bella Bash – for Regie Hamm’s cause

Tuesday, October 19, 2010

Excited About This!