Grateful of this day, September 11th

On this day, 28 years ago, our Lindsay was born!

In thinking of this day, I reflected back on my previous blog posts. I was reminded of  all the lessons she has taught us and continues to teach.  Today I want to reflect and honor her with the gifts she has given us, to all of us!

We are grateful for these little lessons she brings:

• Don't be quick to judge. Things are not always what they seem
• Waking up daily with a smile on your face makes your day brighter from the start. You always have control over your mind. You can choose to be happy or a grouch. Smiling always win.
• Although she was "Yet without a word" for a long time, her "Lindsay language" touches others and we love hearing people using "Lindsay language". She connects us to others with her language.
• She is a great social director and at any event, we meet people we would not otherwise. She treats everyone in the room the same and thinks everyone should talk to everyone else. No clicks, no judgements, no assumptions. Everyone meet "my mom, my dad".
• Because of her special needs we have special angels in our lives, who take care of her like their own and we are so blessed!
• She loves her "Bobby", aka brother, Taylor so much and he loves her. She calls him daily on her old flip phone to check in and we are reminded that if you think of someone, just pick the phone up and call to say hi! He calls her, and her every reply may be "um yeah" and that makes him smile. We are grateful for the connection they have.
• Don't hold grudges and forgive.  That apologizing is ok, even if you think you are right. That saying sorry is better than losing a moment or a relationship to your ego.
• We have a great "post it note". Her memory is amazing. Tell her to remind you to do something and she won't quit until it is done. She doesn't let me procrastinate, which is a quality I have!
• That some people just don't get it but never give up either. 
• She has taught to adapt to situations. We think we might have control but none of us do! We can let the little interruptions in our plans stress us out or go with the flow and know that things do always work out. Nothing is certain and find the blessing in the new plan.
• That there are treasures to be found in every situation, if we just learn how to slow down.
• She makes people feel special! You may not see Lindsay for awhile but when you do, she will remember you. She will give you a hug like it was yesterday. She teaches us that once you make a connection with someone, that connection is always there, no matter how small.
• We all need our comfort. Hers is in band-aids and she may need 10 fingers covered on some days and that is ok. Everyone is dealing with something and has a story. 
•  Lindsay loves her purses, papers, going to the story and knows we use money to pay for things. However, it's only money, don't get too attached to the almighty dollar, after all, it is only paper! :)
• You can always find a common ground with someone, even in hard situations
• She teaches tolerance. Just so simple....be tolerant. Someone else may have it worse.

I am grateful in that reviewing my blogs over the last few years that I don't have many of those days where I feel frustrated. Writing about my feelings helped me find the lessons, which helped me to grow. I realized that we are not alone and that we all do our best as parents. I have learned to bend in life or it will bend you. It doesn't matter if she needs five purses with her one day! That my idea of organization is different than hers and neither way is necessarily right or wrong. I have learned that my irritations are usually at things that I have not accepted in myself!

So on this day, September 11th, we honor the lives that were lost in the tragedy of 9-11 and we celebrate Lindsay too!  "She lights up a room with her smile, she brings sunshine to cloudy days and she spreads joy wherever she goes".  Thank you for the lessons, the love and the precious moments we have with you! We love you, our Lindsay Rae!   Thank you for teaching us to enjoy the little things, to be patient, loving and kind.

"She is always teaching us, yes"

Lindsay and I had a long week in Denver last week. She had a EEG study with hopes of finding out more about her seizures. She was admitted on January 28th and for 5 days she was hooked up to a EEG machine with 27 electrodes attached to her head, five cardiac monitors, two IV's and 24 hour video monitoring! She was unable to leave the room and needless to say, she was a trooper and once again taught myself and others many lessons!

#1 - Someone always has it worse -  During the days before we were admitted, I was having a hard time thinking of being cooped up in a hospital room for five days and my son, Taylor, reminded me that "hey, it is Lindsay who is being hooked to a machine for five days". Yes, here I was complaining about the inconvenience when it was Lindsay that was constantly being viewed, having someone wrap and re-wrap her head with gauze, having glue put in her hair to hold the electrodes, not being able to shower for 5 days. I was reminded by my smart son that I didn't have much to complain about!

#2 - Take one step at a time  -  Lindsay didn't quite understand the whole process and that she was there for the long week. I think that she was hoping that the each step was the next step closer to getting home. I think that just dealing with the current schedule or what was going on at the time, was all she could control and made it ok. Although she wanted to go home, she just persevered and stayed steady in her cooperation, one step at a time.

#3 - Tolerance!! - Wow, did she have tolerance! She was interrupted during the night for blood pressure checks, electrode checks and if they weren't in place, they would unwrap her head to fix the ones that had moved. All those electrodes were pulled together into a ponytail that ran down to a little black purse, that remained attached to her. Imagine having to sleep with a big ponytail of electrodes coming down to a purse not to mention the 5 cardiac monitors. Many times her movement during the night would displace everything, thus someone coming in to turn on the lights, wake her up and have to fix them. She was amazingly tolerant and always managed a smile.

#4 - Find your common ground - Lindsay was stressed and didn't know any of the nurses at first and they weren't sure about her either. They didn't know what she understood, how she would respond to them poking and prodding. Lindsay always found a way to find common ground by wanting to show them a picture of her brother, her dog or her dad. If they had a dog, they would start talking about it and if not, they asked Lindsay about hers.

 #5 - A Smile always wins - I had this phrase on a magnet and have always believed smiling wins over a grouchy face. Lindsay (and I) were sleep deprived one night, having to stay up till 2 am and awakened at 6 am with no naps during the day. I have to admit, when we were awakened at 6am, I was grouchy, but the first thing I saw on Lindsay's face was a smile. Maybe it was because she got to have a pop at 6:30 in the morning, but nevertheless, her smile made me smile. It is contagious, even with 4 hours sleep!

 #6 - It's okay to be demanding sometimes - Lindsay is never demanding. She may know what she wants but has a way of getting it without demanding. However!  During a re-wrapping of her head, one of the nurses helped her get situated in the chair. We were watching the process when Lindsay realized that the RN was holding the remote, her remote! Lindsay, in her sweet way, demanded the remote be handed over to her, which made everyone laugh and thus the picture! The RN came in shortly after with the sign with tape, letting everyone know, whose remote it was!

#7 - You can always say yes - Thursday night she had a seizure and it was a tough one! As her mom, it was weird for me wanting a seizure to happen so we could better understand, but when it happened, I couldn't watch. The RN's were amazing with her! After awhile she woke up and being nice was over! She was pissed off, and rightly so! She was frustrated, irritated, not feeling good, wanted to go home and no one would let her get off the bed. She proceeded to rip all the glued electrodes off her head and was not having any of this anymore! She finally calmed down and I was told that they were going to replace the electrodes on her head. Are you kidding me? You really think she is going to sit still and have someone put more on head? I almost said no to them. I didn't want her stressed out more. This is when you know someone up above is looking out for you. The technician arrived to put the electrodes on and immediately had a re-pore with Lindsay. Turns out she had a son with special needs and had a seizure disorder. She knew exactly how to deal with Lindsay, help her to remain calm and cooperative. I stood there in dismay, not having any idea that she would cooperate and say yes. She ended up having another seizure soon after the electrodes were in place, thus giving the doctor confirmation of where they were occurring in the brain. My sister, Wendi, is who said to me the lesson learned in all of this. Lindsay is always teaching us, yes! We can say "no", believe that "no" is the only answer, but saying yes sometimes brings us answers.

I had several of the RN's tell me how Lindsay affected them, how they learned from her and that she was their favorite patient. We can all take these little lessons to heart......Someone always has it worse, that in stressful times to take one step at a time, to be tolerant of others and situations, that you can always find common ground with someone, smiling wins, be strong when it matters AND when we think the only answer is no, you can always say yes!  You never know what might happen.

It's a Miracle!

I admit it....I was in an irritated mood last night. Can't really pin point why. I was just irritated and not very patient with Lindsay or Jerry :). I was feeling like I wanted some "me" time.  I think we all have felt that way sometimes, that somedays you just need a little more. Or, that we all have that irritated feeling sometimes and don't know why.

I was enjoying a glass of wine after dinner when I realized that Lindsay hadn't had her shower yet. Just getting relaxed and having to get up and give her a shower wasn't something I was excited about. Jerry and I work as a team and thank goodness for that, but there are just some things a mom's gotta do. Lindsay wasn't very thrilled with having to get up and get showered either, so we were quite a pair!

Bedtime rolled around and I felt like I just wanted to snap my fingers and have it all done. Or wiggle my nose like Samantha in "Bewitched" and poof...everyone is ready for bed! We started a new routine of reading in bed vs. watching TV before bedtime.  It has been working great as we all become more relaxed by not listening to the news! I am usually the reader and reading last night  wasn't something I felt like doing. But as the pages turned, so did my mood.  It's a miracle....changing your focus does make a difference!

Time for bed and Lindsay's routine started... getting Grr a drink of water, getting her pair of socks to wear to bed, getting the doTerra oil to rub on her feet, etc. Then her mood changed!  "I don't want to go to homework" (aka day program), "I want to call Bobby" (her brother), "Call mom" (grandmas),
"go to the store", "put, put on" (paint her nails), "put, put on" also means, where is my band-aid? It was as though she was feeling like I did earlier except she wanted more "us" time. 

As you may have seen in a previous blog, band-aids are a big thing in our house. Our supply is usually abundant and is hidden all over the house. We need to ration them, for obvious reasons, that is why they are hidden.  I had cut my finger a few days ago and had gone through our last box and so there weren't any band-aids to give her, which didn't make her happy.  We were at the point of letting her stay up with the tv on when I thought I would make a last ditch effort to find a band aid.

If you were a fly on the wall, I am sure it was comical watching me go through all of our hiding places we have used!  It's a miracle!  I found a box of band-aids in a place we forgot! And they were Bugs Bunny ones too! I walked in to her room and I wish you could have seen her face!  She widened her eyes and excitedly said, "You go to the store?!!" Like I had magically went to buy more,  performed a miracle and wha la....all was good with the world!  She gave me a huge hug and a long one!  Her focus changed and she was happy to go to bed, thanked me for "going to the store". My focused changed, I was happy that she was so happy I went "to the store"! Plus her reaction was just so darned cute! Immediately, the way she was fighting going to bed, stopped with a change of focus.....a band-aid!

I guess a lesson I was reminded of last night was that no matter what the reason for your bad mood, and you may not know the reason, that you have control and can change your mood. I need to remember to take some of "my own medicine" and be grateful for the little things, like Lindsay. To be grateful I can sit down after dinner and enjoy a glass of wine, that I can "go to the store" for more band-aids, that I can see to read. All may seem like little things but it works! We sometimes forget to take a moment and realize how fortunate we are.  A reason why I started another Photo Project 365 this year showcasing gratitude thoughts. Taking an inventory of our daily little blessings, helps.

I was also reminded to buy more Band-aids, because they are a miracle, to Lindsay and if I think about it....they are to us too!

Wish we knew

Many times, Jerry and I look at each other and wonder what is going on in our Lindsay's mind. What she is thinking and why and sad that we can't help her sometimes.  She is so dang smart, as she is aware of everything around her.  Intuitive and receptive she is. And although she can't sometimes tell us what she is thinking, she sure leaves us hints.

Like this morning! She goes to her day program Tuesday thru Friday, so she has a three day weekend most of the time. Like most, Tuesday is her Monday and like most, she would rather extend her weekend. On Tuesday's, her day program volunteers at our local dog shelter, walking dogs, petting the cats, helping with laundry, etc. And as you know, Lindsay loves dogs!  One of the requirements of volunteering at the dog shelter is that participants wear tennis shoes. For some reason, on Tuesday's we have had little battles about wearing her tennis shoes. We know she loves her flip flops, a lot! So last week, we put her tennis shoes in a bag for her to take with her, as a compromise. Today she indicated she didn't know where her shoes were and when I went to look for them, I found them with the shoelaces taken out. I shook by head and smiled as she was so creative and smart in knowing that if the shoelaces were gone, she couldn't wear them. But smiling in wonder that she was sending me a message.

So, why isn't she wanting to wear her tennis shoes? The first mention of wearing her tennis shoes on Tuesday mornings brings a change.  Does she not like going there?  Is it because it is a Tuesday (her Monday) and she would rather not wear any at all? Or is it just about the shoes, like most of us girls? 

Whatever the message, we will try and figure it out, but sure wish we knew!

I landed somewhere else yesterday

One of my first blogs I wrote about a poem we received when Lindsay was little. It uses the comparison of planning for a special trip to Italy with having a baby, all the preparations, the reading, etc. The poem then explains how things can change when you land. All those preparations for traveling to Italy suddenly get thrown out because you have found out that you landed in another country instead. Or in the case of our children, we find that we now have someone really special that we didn't know how to plan for.

Getting to the point, I landed somewhere else yesterday. Like other days, I had in my mind what my day looked like. Errands, stopping by to see a friend, etc. But our Lindsay has been having anxiety issues lately and we could tell the night before that her mind was working overtime on everyone and their schedule. Questions and more questions about who was going where, what the day was going to look like. Seems that no matter how many times we re-assure her, still more questions with the same answer. Her worrying had taken its toll, and walking out to the van for her day program, she had an anxiety attach. She lost her balance, got disoriented and had to sit down. After a few minutes on the sidewalk, we came inside and she laid down. I then realized how quickly my day had changed.

Admittedly, a little frustrated, a little out disoriented myself, I started thinking about rearranging my day. However, most of what I was going to do couldn't be done without leaving the house, so I ended up sitting with her and crocheted and napped, something I hadn't planned on doing at all.

What's the lesson here? Well, I am reminded often that nothing is for certain. We can plan or think we have control all we want.  No matter how much we try to be prepared, sometimes it just isn't going to go according to our plan. We can get pissy and frustrated or we can accept and go on, find the blessing in our new plan. Who knew that I would get so much done on a baby gift AND have time to take a nap too!

Jerry called a few times during the day to check in. He could sense a little frustration earlier in the day and when he came in the door after work, gave me a hug and said, "you were planning on going to Italy today, weren't you?" Made me laugh and smile and therein is my blog topic for today!

It's only money!

It has been a long time since I have written......almost a year!  Some have asked why I haven't written and there is no reason, just life taking over. Usually when I blogged I would have an inspiration or the idea would come easily to me and for some reason, the ideas or easy writing just haven't flowed. 

This morning, however, inspiration came easy! Lindsay was getting ready to go to "homework", aka. her day program. Our routine is simple. I wake her up, she asks about Grr, she slowly gets up to roll into our bed for a few more restful moments with Grr. We talk about the day, that everyone has "homework" and that we need to get ready. Brushing teeth, hair, picking out our clothes and loading up the purses for a full day's work. If you have read an earlier blog, you know how she likes her purses!  Part of "my" routine is trying to be sneaky and discard any extra baggage, lighten the load, so to speak. She doesn't usually notice accept for when I find the whole entire package of oreo's or candy in her bag, something she sneaked in for a midnight snack.

This morning, I find the usual stack of papers, wallets, flip flops and lots of torn papers, fyi a future blog topic. In the bunch of torn papers, I find a dollar bill, torn up as well. Not sure where she found it but it was torn up along with all the others. To her, it is just paper. To me, it's money. I was a little irritated, the thought of a dollar bill torn up, never to be used again. I explained to her that we can't tear up money, that it is what we buy pop and burgers with. She didn't seem to be too concerned.

I started thinking. Although she knows that we need "pour" (her word for money) to pay for things like burgers and pop, she didn't have the attachment to the money like I did. Why did I place so much value on that $1 bill, when I don't think about the value of it when I want something that I don't really need. Or when I won't do something because of how much money it will cost. I placed value on that $1 bill that she didn't. I was attached to it and she wasn't.

It was a realization that money is only as valuable as we as a person or society believes it to be. We use it to compare ourselves to others, we feel the need for more of it, get stressed over it, we judge others over it and feel the burden that having it or not having it brings. Lindsay, however, was free of the burden of having that extra dollar bill. She didn't need a burger or pop today, was not attached to what it could do for her, didn't need it to make herself feel better nor did she feel the least bit of regret at tearing it up.

I realize that our Lindsay doesn't understand the full concept of money, why we need it, etc but it just made me realize how much we attach to the almighty dollar. Just like the paper that she tears up, that extra bill in her wallet, was just that......an extra piece of paper.....a reminder to me this morning, that it is only money. 

A touching moment today

This morning was a reminder to me that we touch people's lives in ways we don't know and a reminder to tell those we care about, what they mean to us.

As I walked Lindsay out to the van this morning, one of the clients had tears in his eyes and told me he was sad. He told me he had lost another friend. I could see he was very upset, so I asked him about his friend. He told me he had started writing about him in his book so he could remember him. He carries a 3-Ring binder with him everyday, which is his book that he is writing.  I  realized that I had just read an obituary this morning of his friend. I told him I saw it in the paper.......he raised his eyebrows and asked if he could see the paper and have it to keep, that he wanted to see his picture. I went inside to get it and gave it to him. He looked at the photo and said, "he was one cool dude".

As I walked back into the house, tears rolling down my face, I realized how this person had touched his life. How, Lindsay's friend, "John" ( as I will call him) wanted to see his photo, write about him, tell his story so he wouldn't forget. (This is why I love what I do with my Heritage Makers business. Helping others tell the story that goes with the photos.)

So.....Lorenzo Ernest "Ernie" Garcia....you were "one cool dude" and you will be missed by "John". You touched his life, you were his friend and he is writing about you today!

Another AHA Moment!

I have read that when we get irritated with others, it is because they possess qualities that we in fact possess but haven't accepted in ourselves.

While getting packed for a weekend getaway, I got irritated with Lindsay as she proceeded to bring down to the car a BIG bag full of her beloved purses, a backpack filled with her important "papers", another purse with her phone and other accessories all of us girls love. I told her she didn't need to bring all those things and she looked at me with a look that said, "I am taking these things and there isn't anything you can do about it". I didn't battle but got irritated.

As I was packing the car, filling it with all MY crap, I had an AHA moment. My crap consisted of my knitting bag, my books AND my Kindle (go figure), my lap top and a few magazines too! I had a flash back of Jerry looking at me as he was packing the car for a weekend away and thinking, "Kelli, when do you think you are going to have time to do any of these things in two days?" And, me giving him the same look Lindsay gave me that said, "I want to work on this knitting project that I haven't touched in a year and read too, and I might have time to work on my Heritage Makers project too".
AHA, she learned it from me! Having those comforts of home that we enjoy doing during our down time when we go somewhere else. Or is it that we just like comforts of home while away?

So, from now on, I will try not to get irritated at her pile of purses that she transports from her bed to the couch or her pile of papers that keeps growing daily and she transports to and from. It is no different than my books or magazines, my projects of knitting, photos, etc. The things that brings comfort to her and that she enjoys doing are no different.

What was irritating to me, was something I do, just in a different way.

We all could have used a little help from Lindsay in high school

First off, I haven't blogged in awhile and glad to be back!

Lindsay and I just recently returned from a girls trip to Denver for my sisters birthday. We also went to a High School reunion Happy Hour. It was sponsored by my younger sisters class of 1982 but I was going to meet up with some friends from my class in 1978. Ridiculous as it seems, walking into a bar about to see people you haven't seen since high school, still brings back all those "feelings".

As it turned out, it was mainly people a lot younger than I but thanks to Lindsay, I met almost everyone! It took no time at all for her to jump into the party mode. She didn't want to stay with me! No, she got her pop in hand and followed Wendi around as her social little shadow. Wendi would talk with someone and before I knew it, Lindsay would motion me over to meet everyone. Most people didn't know me or Lindsay and "our story". But before long, Lindsay had caught everyones eye and her ability to engage. Before the night was over, Lindsay had pulled out my camera, found a photo of Grr and was showing everyone she could.  People would come over, on their own, just to see her proudly show off Grr. It was touching and thought provoking at the same time.

Lindsay knew how to work the room, as they say. She did it without judgement, without preconceived ideas. Didn't matter if they were a "jock or freak or nurd". She wanted to meet everyone and for everyone to meet each other. No matter the status, no matter the dress, no matter if they were "cool" or not, they were all equal in Lindsay's eyes.

Something we all could had a little help with in high school.

"If you do not bend, life will bend you"

We will often tell people that as much as we would want things to be different for Lindsay, she has been a blessing and has taught us many things and  helped us to be more patient and definitely more flexible. A reminder of that was evident to me this morning.


All of us were ready for our day.  Jerry was off to work with a webinar meeting, Lindsay had her lunch box and purses :) and was waiting for her ride to day program and I was ready to go to Hospice and then a lunch date with a friend. Then, comes a seizure and in an instant, our day changed. Lindsay would be staying home.


Every morning I read a daily thought from The Book of Awakening by Mark Nepo and it is amazing that on some days, the quote or daily awakening seems so appropriate for my day. Today's thought was about humility and the "profound bow". After knowing everything I had planned for the day would now be changing, I immiediately thought about what I had just read earlier with my morning coffee. I could have been all stressed out and irritated about our changing plans, wanting "my plans" to be the "most important" and maybe I was for a little bit but knew that if I didn't take a deep breathe and bend, life would bend for me.


The great thing is that Jerry was willing to bend for me, re-arranging his day if need be and we were able to work things out all around. So much easier to bend and be flexible!


Grr, on the other hand, is still starring at me, wanting her morning walk though!

Band-aids

If you know Lindsay, you know she loves her Band-Aids! A friend of my sister, who knows Lindsay's love for the little band of comfort, shared with me a poem written by Shel Silverstein from his book Where the Sidewalk Ends.  I thought it was perfect to share with you about her adoration of this "flexible fabric"!

Band-Aids
By Shel Silverstein

I have a Band-Aid on my finger,
One on my knee, and one on my nose,
One on my heel, and two on my shoulder,
Three on my elbow, and nine on my toes.
Two on my wrist, and one on my ankle,
One on my chin, and one on my thigh,
Four on my belly, and five on my bottom,
One on my forehead, and one on my eye.
One on my neck, and in case I might need em
I have a box of thirty-five more.
But oh, I do think it's sort of a pity
I don't have a cut or a sore!

This says it all and it is so true! Many times we've had a Band-Aid on several fingers, toes, shoulders, wrists and all at the same time! We have to hide the Band-Aids around here, as many of you know. Jerry and I are dilusional if we really think Lindsay believes we have no Band-Aids on supply for her. As it has become a "fix all" for times when we don't know how to fix the situation and miraculously, we will say, "I will go and see if we can find a Band-Aid" and wall-laaa, everything seems to be better. She knows we have a stash and is totally playing us!

In the end, regardless of whether she has a cut or sore, they bring her comfort. They also seem to help us solve an issue that we can't understand or that she can't express. As the slogan on the Band-Aid box claims,
"You're going to be just fine!"

If you see a sale on Band-Aids, let me know!

It is just what she does

Lindsay makes people feel special. It is just what she does!

Yesterday while running errands, we were in a traffic line waiting to get out of the shopping center. There was quite a line of cars waiting to turn right and at the corner was a gentlemen holding a sign asking for help. A common sight we see these days. Lots of people struggling to  make ends meet. I noticed that he was very friendly, waved at people in each car. I don't know if those people responded but he kept up with every car that came close. We were drawing closer to making our turn and I notice that Lindsay waved her hand to him, gestering for him to come see.  "Come see my Babygrr" she says with her hands. My first reponse was "oh, no, Lindsay". I look up and he has an excited look on his face as though he may have hit the jackpot, or so I thought.

We had taken Grr to the park for a walk and it was a beautiful day, windows rolled down, sun shining brightly. He comes to the window and I tell him, in an apologetic way "she wants to show you her dog", thinking he is expecting me to hand him a little cash. He then says, "oh, thank you, you have such a cute little dog. Is it a Cockopoo?" "No, she is a poodle", I say and he begins to tell me that his friend's goat just had babies. I immediately realize that although a little cash would have been nice, he was just so pleased to be talking with someone, to connect with someone, like we all do.

The cars were moving forward and so was our saying goodbye. He said "thank you for showing me your dog" and we told him to have a great day and as he walked away, I noticed a little more happiness all around. I had expected an upcomfortable situation, maybe he expected some cash but what happened was that Lindsay reached out to someone with no expectations, no judgements, only belief that connecting to others is sometimes the most important thing.

She was kind for no reason......it is just what she does!

Change isn't so bad

Last weekend, Lindsay and I traveled with another mom, daughter and friend to watch Taylor and the Mesa State Baseball team play in St. George, UT. At first, Lindsay was excited about going to "Bobby ball" but as the time approached to leave, I could see her start to worry about the change in her daily routine.

Change in routine has always been a little hard for Lindsay. As she has gotten older, those changes or going to new places seem to affect her even more. She likes her own bed, to know where her things are, know where Babygrr is and who will watch her and we can't forget her purses, papers and tv!

On our drive there, she was full of questions as to where dad was, "go home?", where the Babygrr was, etc. We followed our friends and stopped for a bite to eat and she was so withdrawn and shy, even though she knew them. Upon settling in for the night, she had trouble falling asleep. She talked to herself and to me for quite awhile before finally giving in to sleep. The next morning, we stopped at the outlet stores and she was very upset that she didn't have bandaids, a wrap for her knee and chapstick. After patience from everyone, we made a special stop and all seemed good with the world after she had those little comfort items.

Her comfort level with the other girls, who are close to her in age, began to increase and it was so cute watching her want to be like them too.  She wanted to wear flip flops like them, have her feet up on the bleachers and I even saw a little more independence too. She cheered on the team, loved being part of what the other girls were doing, gave out hugs, held hands and all of a sudden, the change wasn't so bad.

The next morning, however, change came quickly.  The games were canceled due to the rain and our plans changed from going to shop and to "ball", to getting in the car and driving home. With tears in her eyes, she looked at me and said "I want to go to the store and go Bobby ball". For quite awhile, she was pretty upset that we weren't stopping at the store or going to the ball game. The questions started up again about what dad was doing, Babygrr, the "Connie's" in the other car and when we would be going to the store.

I plugged in her DVD and she watched the Friends Season 5 all the way and it seemed to settle her mind and also made her giggle. Made me want to watch too!  None of us like change and for some, little changes are harder to deal with but with a little patience and acceptance from everyone around, change isn't so bad sometimes! She loved feeling special, like one of the girls. Don't we all!

Epiphany in Child Pose

While in child pose at yoga this morning, I had an epiphany! While I was supposed to be concentrating on my breathing and setting my intention, I was thinking about my day yesterday and how I was struggling internally with some situations, relationships, making assumptions, wondering why when you try and try, why some things just aren't easy as they should be.

I realized as I started my breathing that I allowed my thoughts to transfer onto Lindsay yesterday. I got upset that she found my new hiding place for gum, that she had 15 purses on her bed. Yes, really 15! And they were full of papers, packed to the brim. I got irritated that she lost her ring while at her day program and that she wanted to "put-put" on band aids on her fingers, when she already had them on three of her fingers already. By the end of the day, I was grumpy, short tempered and cried, not knowing why I was acting this way.

What I realized is that I transferred my stress, my frustrations onto my sweet daughter, when it had nothing to do with her. Yes, I wish things could be easier but it is what it is and on a daily basis, these things are what we live. They actually make me laugh most days and help me realize, that those little things really don't matter much. Why is it that we often treat those we love in a wrong way because of something that is totally unrelated? We transfer our frustrations onto them when it is really about something else.  I let those thoughts and frustrations about other things take control, which controlled how I acted.

Thanks for sharing in my self-therapy session. I try to be positive most of the time with my posts but wanted to share my feelings because we all have times when we appear to be upset about something, when in fact, if we stop and breathe, it is really about something else we just haven't "opened the door" to.

Thank God for Jerry, who has patience when I don't, who knows to take over when I can't, who knows me better than I know myself sometimes. Thank God for Lindsay, who teaches me literally daily, whose sweet and kind nature gives me a hug when I need it the most, who inside might me calling me a "focker" but loves me just the same.

Oh, and thank God for Child Pose!

My husband is so smart!

Since a few weeks ago when I wrote about Lindsay wanting to keep her tv and lights on at night, it has been  a learning experience and a reminder to me that sometimes my husband is so smart!

We did learn to let it go, let her keep the tv on and not worry, however we did unscrew all the light bulbs! Some nights she would keep it on with no volume and other nights, we would wake from a deep sleep to hear her tv blaring with noise from C-Span or the Spanish channel!

She seemed to be adjusting during the day to less sleep until the seizures started to occur with frequency. She had one bad seizure followed by a day when she had four. Thinking she may have an infection or cold that could have triggered them, we went to our regular doctor to find her in good health but due to a lack of sleep, it could have triggered the onset of more seizures. We also saw her neurologist and after 2 years on one medication, which hasn't worked as well as it should, we are now trying a new one!  Quite a process and hoping for better management!

But back to the tv!  I think she just likes to have it on, as it gives her comfort of some kind. The volume thing is what we needed to figure out. She could turn the volume up on her remote but wouldn't turn it down. So to ensure OUR better nights sleep.....Jerry figured out a solution! He duct taped her remote with only the volume and channel buttons visible. Now she can turn up the volume only so far, can change channels to her hearts desire, while we have a secret remote where we can lock the volume control!

She still has her tv at night, a little volume AND we both get to sleep without learning spanish in our sleep!

Is there such a thing?

Is there such a thing as Sugarless Gum poisoning?  I wonder.

I like gum, Lindsay likes gum.  She is usually good with it, when it is monitored.  But like when you start eating certain candy you like, it is hard to stop because it tastes so good. Just one more piece!  Well, that is what it is like with Lindsay and gum. 

I ask this question because as I was getting her ready for bed last night, noticed her purse open (well, one of her purses) with three packages of gum, all empty. The little wrappers all neatly tucked inside as well.  Yikes, her poor stomach! I found no evidence of her spitting the gum out  and I wonder what it must feel like having all that gum in your system.

Note to self.....find a better hiding spot!

What to do??

WE ask  ourselves what to do with our latest "battle" with Lindsay.  Maybe not a "battle", more of an "issue" or "phase" she is going through.  Looking back over her life, there are periods of time where we deal with these issues, phases or battles, whatever they might be.

When she was about three years old, all of a sudden one night at bedtime she didn't want to sleep in her bed. We would put her to bed, she would get up and after getting tired would fall asleep on the floor by her door. After many nights of trying to get her to stay in bed, we gave up and she literally made a bed on the floor. Her big bed was never slept in and it stayed made up with bedspread, sham and pillows while she had her blankets and pillow by the door that she really slept on. This went on for about two years! We finally did get her to sleep in her bed but had to move to a new home, get a new bed and either Jerry or I would literally have to stay with her until she fell asleep for her to stay put! I remember thinking, "will this ever end?"

Well, it did! Now onto this next phase!  Now she wants to have her lights on AND her tv on all night! We will put the tv on timer only to have her turn it back on again with the volume up. We started unscrewing the light bulbs in her lamps which only made her frustrated and she broke the turn knob trying to make it work. We have now started unplugging the lamps at bedtime and we haven't figured out the tv situation yet.

We worry that she isn't getting a good nights sleep, however, she seems to get up and go about her day without any naps.  So, are we over-reacting? Just because we like the room dark and quiet when we sleep, does she? Is it just a side effect from the seizure medicine she is on? Just like we gave in and let her sleep on the floor for two years, should we just let it go, let her keep the lights on, watch tv with one eye open all night? 

We are realizing that as she gets older, more independent, knowing what she likes and dislikes, that we have to give up some control. Yet, when her tv is waking us up in the middle of the night, we ponder, what to do?

This too shall end, just hopefully sooner than two years!

Always amazed at Lindsay's intuition

It  is "looking a lot like Christmas, everywhere you go".  Some people are happy, some are sad or too busy to know how they feel!  The list of things to do becomes longer, our recipes from last year are revisited, cleaning the house for guests to arrive and it is all very exciting. 

With all that is going on, I was made aware of my mood today when Lindsay and I were at the grocery store.  I did pretty well to get out of the house and run errands early since I have lots on my to-do list. Rush and multi-task, for more rushing and more tasks! She kept coming up to me and giving me a big hug and kissing my cheek.  I found myself irritated at first as she would come up in front of me when I was looking at the shelf for an item. After the second or third time, I said to her, "you are awfully lovey today". Then "aah-ha", it donned on me.  She, as usual, was intuitive to my mood and was trying to slow me down. She was telling me in her own way, "it's okay, mom and you need a hug".  So true and just what I needed and after my aaah ha moment, our hug lasted longer. 

I have come to realize that things always work out and that often the obstacles we face our ourselves. If we stop moving and thinking and fixing, that we often find a treasure under our agitation. My treasure today was that my daughter sensed my mood, saw what needed to be done and thankfully, I stopped the stirring of my mind enough to realize what she was telling me.

Thank you Lindsay for your intuitiveness, for your long hugs and for reminding me of the treasure of staying in the moment!

The simple things sometimes aren't so simple

Hello again.  FYI, the code word is still used from time to time, but who doesn't need to go back to the feelings of vacation in our everyday lives?

After giving Lindsay a shower tonight, many thoughts came to mind. Ever since she was a baby, until now at the age of 25, helping her bathe is just something we do.  From adjusting the water temperature, to making sure she gets enough shampoo on her hair or sometimes to the other spectrum, making sure she doesn't use the entire bottle too!  Shaving her under-arms and her legs, making sure she doesn't get the urge to pick up the razor and do it herself.  Like all of us, she likes to stand in the shower and feel the warm water for long time. We thought Taylor was a long shower taker!  To save time, I will often shower with her and she soon ushers me out when she wants her water hog time.

Tonight, however, it occurred to me that as she is getting older, she wants more and more independence when yet, she needs all the help that we give. Sometimes it isn't so easy to clean her ears, to clip her nails, floss her teeth.  We give in, to avoid the struggle and then when I think of it, that it has been awhile, I feel so bad. How could have I forgot to to do that? She doesn't know to do it herself, some of the daily things we do for ourselves.

I will be honest.  It isn't very often that when it is my shower time, that I don't include Lindsay.  Sometimes it is just easier to, as they say, "kill two birds with one stone".  I realized tonight, she doesn't like the idea of sharing shower time with me either!  Sometimes having a few minutes alone in the shower with the warm water trickling down upon your head is just what someone needs. 

But....it is so hard to let go of the simple little things we need to do for ourselves or others without letting the necessities of every day life come into play.  Do I let her stand for long moments soaking up the water, forget about the forest growing on her legs, and not worry if she uses conditioner instead of shampoo? I do let up on some of those things and then like tonight, after letting things go for awhile, I realize that she depends on me/us to help her with these simple things, even if she doesn't like it. 

So, as in everyday life, we learn to adapt to the situation. Okay then... not tonight.... then tomorrow I will clean your ears, shave your legs, etc but I am realizing that remembering to do those simple little things isn't so simple!

Reality is good

Jerry and I just returned from a 10 day getaway by ourselves.  Yes, it was wonderful! Time to ourselves, time to relax and do as we please. But as they say, "all good things must come to an end" and after the first day back we have realized that as watching the sun rise and set against the waves of the ocean is indeed wonderful, reality back in Grand Junction, Colorado is good too.

In reality, we really stressed over how Lindsay would react to us being gone for so long.  We have gone on trips before but not for this long.  We worried if she would have seizures while we were away and if she would be so stressed that she wouldn't sleep. We wondered if in her mind, she would understand us going away by ourselves, if she comprehended that we would be back and things would return to normal. We just didn't know how she would react to the changes to her life in 10 days.  In reality, all went great.  We had a wonderful friend, Kelli (yes, another Kelli with an "i") stay at the house with her and they had a great time!  We would call home and Kelli would say she couldn't believe how Lindsay acted so sad when we called!  It was as though she wanted to make us feel like she missed us but in reality, she was having a great time!

In reality, it was so sweet to see Taylor pick us up at the airport with Lindsay and Babygrr in the front seat of the car.  All three of them with smiles on their faces, happy to see us.  We were chatting with Taylor in the car about things and Lindsay reaches over to turn up the radio dial volume to hear the song playing.  Taylor grins as he looks at Lindsay and says "you must like this song, uh?"


In reality, Lindsay reminded us right away of the important things!  To "go to the store", "get my papers", "babygrr eat", " call my mom" and that we needed bandaids!  (Band aids- future blog entry!) At bed time last night, she was right back in the routine asking us about our next day.  She asked me, "you get your "caca", mom?" (coffee) and then, a new question!  She asked Jerry, "you get your caca-pop?"  We looked at each other and smiled.  She knows Jerry doesn't drink coffee but likes a diet coke in the morning, kind of like a morning coffee.  Therefore, "caca-pop"!  We giggled!

In reality, it was back to our Sunday routine of cooking a Sunday dinner and then watching America's Funniest Videos.  Nothing better than hearing Lindsay and Jerry laughing out loud at the silly videos.  Then on to Extreme Makeover Home Edition, having tears in our eyes of the good things people do for each other and watching Lindsay "get it" too.  She smiles and says "aaah".

In reality, after not having to cook dinner for over a week, I was out of practice and burned myself with the lid to the pot .  To make things better, I got a big hug from Lindsay, telling me "aaah, mom", that she liked her dinner.

In contrast, Babygrr, now that is a different story!  She did not have the welcome home attitude that Lindsay had.  No, I got the silent treatment from her, the "how could you have done this to me" and "I got you back by throwing up on your comforter while you were gone" look, which she did! She is slowly acting like she loves me again.  The reality that a animal loves you so much that she got depressed with you gone is amazing! Or could it be that Lindsay drove her crazy trying to hold her the whole time and she is just really mad at me!

We all need to get away from it all once in awhile, but home can be a comforting real thing.  Jerry and I came up with a code word to say to each other at moments when "our reality" gets overwhelming.  A word that can take us back to those relaxing moments together on the beach, listening to waves come to shore. Having a chance to have those quiet moments helps you realize the precious moments of our everyday reality. The importance of finding the wonderful in our world at home each day.   

Yes, reality is good .....but alright, I admit, we  have had to use the code word already. :)