Extremity

"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.

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.

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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.

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!

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!

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?

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

Excited About This!

http://www.bellabash.org

A Great Fall Day!

The first weekend in October, me and Kendal went to visit my sister, her husband, and my two beautiful nieces in Jackson, TN. The weather was a nice fall day with a crisp breeze in the air. We decided to all visit a local pumpkin patch and we all had a really great time!

This pumpkin patch had a really neat exhibit for the kids. You had to help around the farm. Everyone had to get a basket and get to work!

Next, you had to gather the eggs..... Then, it was time to pick the apples off the tree..... Milking time already???

Next, picking the tomatoes off the vines...

Off to the cotton warehouse to get it ready to take to market.....

One last thing before we're done....dig up the potatoes (Kendal's favorite!)

Oops! We almost forgot to search for that perfect pumpkin!


It was a great time and I know one that I'll remember for a long time. Thanks Katie, Mike, Marilyn, and Olivia!!!

Kendal in Speech

Love, love, love my Kendal signing "thank you" after her treat.

April, June, October....What Month Are We In???

I am completely amazed at how time flies. As a child, I heard this over and over and yet I feel as if I can't even get my mind around the fact that I have now been married for 11 years and that my daughter will be turning five in the next several months. I can't quite grasp that time is leaking between my fingers like sand - I can't contain it or slow it down. All I can do at this point is try to remember some of the amazing things that happen in my life and try to hold onto them.

My days (and Kendal's) are completely filled from sun-up to sun-down. Little tasks, such as dressing, tend to take twice as long as most people probably take. Once Kendal's clothes have been chosen, I then have to round her up to stop moving. Between fighting her to change her diaper, trying to bend her legs to get them in the pants (she likes to stiffen up like a board to give me a challenge!), ducking in between her swings to avoid a slap in the face, and physically pinning her down to pull her hair up - I can't wait to get to work to get a break! Then I try to remember what day it is so I have her bags appropriately packed. Trying to remember who I pay this week - did I pay the daycare, the aid, or therapist this week? What is going on in her school class? What activities are going on at daycare? How can anyone keep up and still manage to hold down a full-time job outside the home? I have realized and now KNOW that I can do these things only by God's Grace. He gives me exactly what I need each day to make it through and always provides the strength and patience to start a new day.

Kendal seems to be going through another phase of aggression. We see the Developmental Specialist next month and I think I will once again look into the medication route. It is difficult for me to continually take the hits as she has gotten so physically strong and strong-willed. But I am her mother. What about people that don't love her unconditionally as I do? How is she to make friends if she won't stop hurting people. I'm terrified that she will grow up isolating herself and end up in a home that no one ever visits because they don't want to get hurt. I just wish there was an easy answer. I know that God is working on her and teaching me and others at the same time. Hopefully, we can help get some resolution on this in the next several months with parent training and medication.

Some great news is that we have had a breakthrough on the sleep issue. I'm not going to say that there are no longer any problems, but recently the sleep disturbance has not been as bad. About 10 days ago, the neurologist emailed me (on Sunday night at 8:45 - I love our doctors dedication in trying to help us!) stating that she had been thinking about other things that might be causing the sleep disturbance. She had noticed that Kendal had previously taken Prevacid for reflux and wondered why we were no longer using it. I explained that Kendal no longer demonstrated signs of reflux so we removed the medication. She suggested we try it again just to see if it helps her sleep. We immediately went to the doctor to get another prescription and Kendal has been doing significantly better at night with less awakenings and shorter awake times. I can't believe the last two years she has had reflux waking her up in the middle of the night and we had no idea. I have spoken to adults with acid reflux and they all state that it will wake you out of a dead sleep and keep you up for a couple of hours. I have heard it is painful. This is one of the sad parts about having a nonverbal child. She might have been suffering this whole time - but then again Kendal has such a high threshold for pain she might not have ever realized it hurt. I hope we are finally on the right track - God answers prayers!

Well, I have got to go for now but will update in a few days with pictures from a recent trip to Jackson.

Have a GREAT rest of the Week!!!

Changes Over the Summer

This summer has been busy as ever and I wanted to fill everyone in on the latest....

Kendal is continuing to make great strides in speech therapy - she is making more sounds, beginning to use a few of her signs without prompting, and even trying to say phrases like "I love you". I have to give HUGE credit to our speech therapist, Ashley Carlson. She is amazing with Kendal and knows how to get the most out of her. She's worked with Kendal for about 16 months now and we are blessed to have her in our lives.

One of the newest developments with Kendal has been that we have had to hire a private aide to be with Kendal during the day at her daycare. Kendal requires constant attention (due to pica, aggressive behaviors, and inability to do tasks by herself)and the daycare obviously is not equipped to provide such individualized care that Kendal requires. The daycare has been amazing and has constantly provided support to help Kendal and our family. Her aide right now is a young girl that recently graduated from high school and is now attending college in hopes of getting a degree to work with special needs children. I was scared Kendal would scare her away from her desired occupation!!! Kendal has challenged her, but absolutely loves her. The aide keeps Kendal on target at school by making sure she engages in appropriate play with her peers, works on academic work by doing hand-over-hand, potty-training, and following directions. Again, we are blessed to be able to find just the right people to work with us!

Kendal also started school back in the local elementary school for the pre-school special education program. The permanent teacher is back in session and she is doing an amazing job. We are really excited about the constant activities that they have going on in the classroom and the aides that work in the classroom. These people do the work they do because of their love of special needs children. All these people that work with Kendal on a weekly basis are helping her so much!!!

Got Me Thinking

I was at work the other day and heard a commercial for the last season of The Oprah Winfrey Show. What caught my attention is that Oprah was saying that the one primal thing she has learned after all these years is that people just want to be heard. They what to have their voice. They want that connection with others. This really got me thinking.

Having a non-verbal child, I couldn't get the worry out of my head about Kendal wanting to have her voice. I can't imagine how hard it is for her watching the world around her chatter away without being able to get in a word. I know that Kendal will always be "different" from others in the fact that she won't be able to talk. I know that most people will never know how cool she is because they will never take the opportunity to know her. This realization is so hurtful to my heart. We all want our children accepted, but realistically I know that Kendal will be made fun of due to her disability. The hard part for me is that she won't be able to dish back at them what they throw at her. Will she understand when she is insulted or made fun of? Will I be able to teach her that is doesn't matter what those people say about her? Will she mentally understand what is going on? I don't know the answers to these questions, but they keep me up at night. Gnawing at me when I am weak in my faith.

Part of me wants to be there to defend her when she won't be able to defend herself. I imagine what I would tell people when they give us ugly looks at a restaurant because Kendal is loud or hard to handle. I imagine what I would tell little children who innocently ask me why Kendal won't talk, even though I don't really know the answer myself. I fantasize about Kendal waking up one day and she is a "normal" child. No more therapists, no more specialists, no more medications, no more battles with her, no more constant worries over paying all her expenses, no more..........

I wonder what I can do to make sure Kendal is heard. To make sure that her thoughts and feelings are valued even if she can't express them like most people. I don't know the answers to these questions but they continue to weigh on me. I will continue to work toward understanding how Kendal must feel and give her any and every way to express herself. I know I must help her get her voice. I know that she has important things to say and it is my job to find an outlet for her.

Sleep??? Are you kidding me???

Kendal is as resilient as always. She continues to amaze me. She has more things to do and places to go than most children her age, and yet she handles it so well - especially considering she doesn't sleep much! On the other hand, it's really all she knows. I look back and realize that I started her in all her therapies when she was just 12 months old. She has been doing all this stuff for 75% of her life. She's such a fighter!!!

Kendal's sleep issues have continued to get worse over the last several months. This is a common problem with Angelman Syndrome, although I don't think the doctors quite understand the cause, except that it is something with the wiring in the brain.

Kendal's bedroom is empty. When she was an infant she had the most beautiful room. I spent alot of time and money decorating it so it was just perfect. Over the last 2 years, we have had to slowly remove things from her room that could injury her. It started with the pictures. She would wake up and swing her blanket at the pictures to knock them off the wall. The beautiful curtains also had to be removed as one night she ripped them off the rod. Her bookshelf that I spent hours arranging all the decorative pieces and books on had to be removed because we were scared she would try to climb it and pull it over on herself. Her dresser came out of the room too because she would climb on top and not be able to get down. In addition, the box spring had to be removed because she would wake up and have a total fascination with taking the mattress off the box spring and trying to tear into the matting on the box spring. Plexiglas went up over the windows and the only thing that remains in her room is a mattress on the floor and a shelf on the wall. The two items on the shelf are a baby monitor and a sound machine (each of which have been velcroed to the shelf). The nursery that I took such pride in has now been replaced by what looks like an institutionalized room for the criminally insane. Oh, how far we have come.

I can't quite describe what it is like going through this. James works nights and I am alone with Kendal most nights. She usually wakes up around 2am-3am and does not go back to sleep. Therefore, over the last couple of months, I have probably only averaged 4-5 hours of sleep a day. I have always been the kind of person that required alot of sleep and I will tell you that being sleep deprived has caused alot of physical and mental lapses on my part. Of course, I still work full-time, and my work has suffered lately from my exhaustion. I have forgotten important things, not had the best attitude, and have continued to over-extend myself.

We saw a sleep doctor at Vanderbilt the Friday before last and began Kendal on some new medication designed to aid with her sleep issues. I really liked the doctor. I know pretty quickly the good ones from the bad ones with as many experiences we have had with doctors. She is the department head of Neurology but she was very down to earth and she asked alot of questions and listened thoroughly to my answers. She has a child with a disability and I find that when that is the case, the doctor always seems more understanding and concerned. The medication prescribed is called Clonazepam (Klonopin). We have already increased her dosage twice in accordance with the allowance the doctor gave us. It does seem to be helping a little now that we have increased the dosage to 3 dissolve tablets a night. We are also still giving her a nightly dose of Melatonin. We now just need to pay close attention to the way she acts over the next couple of days. As always, the scariest part of the medications can be the side effects. Since Kendal can't tell us how she is feeling, we just have to judge by the changes in attitude, crankiness, aggressiveness, etc.

Although I already feel like we are going in the right direction on this medication, I am just so happy that we are now with a doctor that really seems like she is trying to help us. Since the appointment, I have had email contact with her and she will be calling me tomorrow evening to discuss the progress with the medication. The only other thing she mentioned in email was possibly looking into the a safe bed (http://www.sleepsafebed.com/index.htm). This would absolutely be a last resort but we are keeping our options open - Kendal's safety is the most important thing for us and as she gets older we definitely want to protect her during her nightly escapades.

I will try to update how the medication is continuing to work. I know that almost all the Angelman moms I have talked to have had similar stories of their own. I hope this can prove beneficial for someone experiencing similar issues.

The picture of an Angel...

2010 Angelman Walk-A-Thon

We wanted to again thank everyone for coming out to support us this year at the 2010 Nashville Angelman Syndrome Walk-A-Thon. We had the biggest team this year and everyone loved our customized shirts. We are truly bewildered by the love and support we have around us. God has blessed us beyond belief!

Also, we raised close to $3,500 with the additional money we submitted on Saturday (not online). Thanks again to everyone that helped make this event such a big success!!!

Making Myself Promises

I keep making myself promises to do better on this blog. I want to update it more so I can remember all the things we've done and just how far Kendal has come. Sometimes I feel like nobody even cares to read it because it's boring everyday stuff, but I know it is good for me to stop and write these posts. It helps get out all my frustrations and reminds me just how good life is when we have one of our good days.

One of our good days is illustrated in the pictures below. I am terrified of horses! Don't know why, just know that they are much bigger than me and that they can hurt me. We visited my aunt and uncle who have horses and something told me I really should not pass down my fears to Kendal, who actually might enjoy them. Alot of children with Angelman Syndrome do hippotherapy. Kendal has never really needed this additional therapy so I never pursued it, but she did so good! Look at my little brave baby! My sister Katie and my aunt Kristy held Kendal in place, while my uncle Joe steered Bo(the horse). I think the pictures tell the rest of the story.

I look at her and am so amazed. I know all parents must feel that way about their child - but maybe because of her disability, I don't take it for granted as much as most parents. I truly can't fathom why God blessed me this much. I am just humbled to have this life, thank you God for your grace!

Tomorrow I take Kendal to the Neurologist and then to the Developmental Specialist. Both of them are follow up appointments so I am not anticipated anything new. I am however really looking forward to her appointment on Friday to see another Sleep Specialist. Her sleep has been really bad again, and with James working nights, I am on my own with her. This particular doctor is supposed to be more familiar with her disorder and why sleep is so affected by it. If I have another doctor tell me she needs a routine, I'll think I'll kill someone! The girl has more routine than anyone - Her nighttime schedule is exactly the same everyday (+/- 5 minutes). I can't possible fit anymore routine into our schedule. It's not the routine that throws her off - it's her brain! I will definitely do a post on this appointment.

Got to run for now, but will really try to do another post by the end of the week!