Life with our Special Needs child

A touching moment today

2011-08-24T09:31:00.000-07:00

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!

2011-07-27T21:13:00.000-07:00

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

2011-07-19T08:38:00.000-07:00

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"

2011-04-13T09:40:00.000-07:00

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

2011-04-07T08:54:00.000-07:00

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

2011-03-01T08:33:00.000-08:00

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

2011-02-22T09:46:00.000-08:00

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

2011-02-04T10:46:00.000-08:00

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!

2011-01-23T14:52:00.000-08:00

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?

2011-01-11T06:35:00.000-08:00

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??

2010-12-30T14:05:00.000-08:00

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

2010-12-13T12:08:00.000-08:00

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

2010-12-01T20:22:00.000-08:00

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

2010-11-15T19:40:00.000-08:00

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. :)

Update on Lindsay's Knee

2010-10-28T09:33:00.000-07:00

Thanks for everyone checking in on Lindsay and her knee! Here is an update......

Thankfully, after the frustrating process of the MRI, the doctor was able to get one good image showing that she didn't have any damage to the knee but it did show some fluid around the area. He watched her walk around the office with no indication of severe pain or limping and after discussion, we have decided to take a step by step process.

First step, is to get blood work to see if anything else is going on. We belong to a Registry of parents and affected individuals with abnormalities of the 18th Chromosome. There are several abnormalities, of which Lindsay was diagnosed with 18P- (minus) Syndrome. It is a short deletion on the top arm of the 18th Chromosome. The slight deletion has affected her communication, learning and cognitive development. Others who have 18P- sometimes have more of the Chromosome missing, which involves many more physical ailments, for which we are grateful that Lindsay doesn't have. The Registry is called Chromosome 18 Registry and Research Society and they continue to study the development, life and medical aspects of those who have these chromosome abnormalities. One area of interest is the possibility that those who have what Lindsay has may be subject to an early onset of arthritis. So, this may be something that may be shown in blood work.

Second, we are going to continue our routine of wearing her knee brace, icing the knee a few times a day and we report back in a few weeks. Lindsay rather likes her knee brace, it has become an accessory that she enjoys and doesn't mind sitting on the couch with her feet up, while her knee of being iced either! :)

We will keep you posted!

Note to Self.....listen to my instincts and pray for those who have no people skills

2010-10-21T07:36:00.000-07:00

Today I was reminded of some lessons!

Lesson #1: Listen to my instincts with Lindsay, that I know her pretty well.

I had my reservations about how this MRI thing was going to work. I knew that she wasn't going to be real cooperative unless she was asleep! As the process of getting her ready began, I could see her anxiety level increasing. She had to take all of her jewelry off, she couldn't take her phone and she had an IV in her arm that really irriated her. AND...... she didn't like the fact that she had to take off her "bew" (bra). She quickly warmed up to the RN's by showing them a picture of Babygrr on my phone, at which time they showed us pictures of their "babies" too! Everyone was happy.

Then came the time to go to the MRI room. I noticed immediately that the technician wasn't real warm and fuzzy. I explained that things would go smoothly if I could transition Lindsay and help her comfort level but was informed I couldn't even be in the room and must go to the waiting room. Not five minutes later, she comes and tells me that the minute the machine started making noise, Lindsay tried getting out! Hello! I told you so! So, after signing a consent form, I was allowed in the MRI, next to the big tube, equipped with ear plugs sitting by Lindsay. She had been given some drugs to relax her and we tried again. Oh my gosh, I forgot how loud that thing is! We managed through the first series of dings and dongs. The tech had told me she could move her head, just so she didn't move her body. The next series started and stopped and then the next.....and then the door opened. "Did you see her move?" says the tech to me in a condensending way. I said, "Her head moved but you said that was ok".....then she says "not during the exam and she moved her whole body", with much irritation as though it was my fault!   She then proceeds to tell me, "We only got one good scan if she is like this, this is going to take all day". Not what I wanted to hear! Lindsay then starts scooting out of her position, takes the oxygen out of her nose and says "I want to go". Lindsay gives me the sign language for bathroom and knowing that she hasn't had anything to eat or drink since midnight and that we went just before we came in, I say to Lindsay, " you are ok", knowing it is her ploy to get out of the situation. The tech looks at me and says in a irritated and questioning tone, "are you sure?". At which time, I say, "this isn't going to happen unless she is sedated" and the tech says, "so, are we done?" Oh, I could have bopped her one!

Lindsay pops off the MRI bed and she is happy and ready to "go to the store'! She wins! I am irritated at the tech, whose people skills need some training, at Lindsay for not cooperating and that it didn't work!   In reality, made at myself that I didn't listen to my instincts. Lesson......I knew she would need to be sleeping if we tried this....."conscious sedation" wasn't going to cut it!

Lesson # 2 : Some people just don't get it

The MRI tech could have been having a bad day, I will give her that. But, it became very evident she didn't have the patience or tolerance for any fluctuations in the procedures. She didn't show any empathy for how Lindsay must be feeling or that she didn't understand the whole process.  Lindsay doesn't realize the consequences of if she moves her body, the image will not be ok. Not to mention, the loud sounds, the bangs, the earplugs, the headphones, not getting to wear her bra! Too much for a girl to handle!

So we go back to the recovery room. I am getting over my frustration and the RN tells me that Lindsay actually did fine and that she sees many people come in with no developemental delays that have to be sedated because of their anxiety level. Our RN was amazingly intuitive to Lindsay, was patient and so understanding. Others that we encountered today need some extra prayers for people skills and patience.

Lesson #3: I am not alone

I take Lindsay to get some much delayed lunch and then "go to the store". All is well with the world!  I hear a young lady in a loud voice say "mom, I am over here". I can see that she has special needs and while we are picking out strawberries, this young lady says to me, "do you know me?" I say "no, but you might know my daughter, Lindsay". At which time, her mother comes over and says hi to us and tells us that "she talks to everyone". I give her my hand and introduce myself and Lindsay, at which time I see a hospital band on her wrist. I ask her if she went to the doctor today too. She says, "yes, and they pricked me", showing me her wrist and bandaid. I tell her that Lindsay went to the same place today too! Her mother explains and I tell her that we attemped to have an MRI today but that it didn't go so well. Her mother tells me "oh yes, we have tried that too, and didn't have much luck either". Amazing how the universe works! It was just what I needed after a long day to help me realize......

I am not alone!

We are often reminded of Lindsay's high pain tolerance

2010-10-18T13:24:00.000-07:00

We learned early on in Lindsay's life of her high pain tolerance. We knew that if she shed tears, it really hurt! She shows incredible toughness when others would be in agony. She never complains of things that ail her and if she does it is a mere little reference and maybe a "I hurt" comment not to be mentioned again.

For the past few months she has been wearing a knee brace, as her right knee appeared swollen one morning. She had come into our room and said "I hurt" and pointed to her leg. Her knee was swollen double in size compared to the other one. We have no idea how she may have injured her knee, nor when, as she never indicated to us that it was bothering her. For all we know, she could have been walking on it for awhile before she complained and before we noticed.

Unfortunately, the brace has helped but after a long day of walking or being out and about, it is often swollen again. So today we went to the Orthopaedic doctor and after the X-Rays showed nothing broken, he felt like the next step was an MRI. Which in itself, will be an experience. Lindsay would not sit still in a confined space for 45 minutes, so we need to go to the hospital and have what they call "conscious sedation". We will know then what the next course of action will be, which brings many questions to my mind. Crutches, no way. Wheel chair, oh my, we might not ever get her out of it! :). Surgery? Recovery? Her understanding of the process, the pain, being careful not to re-injure, etc.

We will just wait and see. But today I was reminded of her pain tolerance as the doctor picked up her knee, laid it out straight, bent it and rotated it around to see when and if she expressed any discomfort. Was she, or was she not, it is so hard to tell. And if she was in pain, bless her little heart, she didn't even show it!

Lindsay is our little "post it" note

2010-10-12T07:20:00.000-07:00

If we need a reminder to do something, go somewhere, get something at the store, we have our own little "post it" note !

She is amazing at remembering things, people and our routine! She watches, she listens and remembers for us, usually without our asking for help. She can watch my routine of cooking pasta, for example and knows that I need the pasta strainer, the special pasta spoon, the hot pad and most importantly, the parmesan cheese and she gets them out before I need them. She will listen to a conversation about what needs to be done during the day or what I have planned and if she hasn't seen those things happen, she reminds me. I will often "think out loud" and she hears those thoughts, takes notes in her mind and reminds me as if I had just written those same thoughts down on a "post it" note!

It can be kind of irritating actually but probably more irritating for her when she reminds me and I don't do what I need to do! I will say, "I need to iron those shirts", so like clock work, she reminds me every chance she gets to "iron those shirts" in her special sort of way. I might not actually be ready to iron those shirts but by gosh, she is going to keep on reminding me until I do! She definitely keeps me on track for checking off those "to do" items.

And there are those times when, we are amazed, that without her remembering for us, we would have been without something we needed, forgotten things at the store, or had to make special trips. She knows where I put my keys, when I have no clue. She remembers that I forgot to put my earrings on that were laying on the dresser. She will remind me at the store I forgot something I said we needed. And usually, she can't say the actual word but somehow gets me to understand the item I am missing!

This morning, my sister, Wendi and I were enjoying a cup of coffee and she said "I just need to go upstairs before I leave and brush my teeth". Time passed, we were saying our goodbyes before her drive back to Denver and Lindsay pops up and gives her the sign language for brushing teeth. Wendi and I looked at each other and just smiled in amazement. Thanks Linds for reminding us of the little duties we can't seem to remember ourselves!

Somedays my patience just isn't there!

2010-10-06T19:24:00.000-07:00

Most days I can say that am pretty patient with Lindsay and then there are days like this morning!

It is evening now and in retrospect, my lack of patience was in part, my own fault. I was projecting what I thought was the best onto what I thought Lindsay should do and in turn, it caused turmoil. The more I fought, the more she fought back, and so it goes!

She was almost ready to go "homework" ( her day program) and I was getting her breakfast and lunch ready. I noticed an abundant amount of items she carried from upstairs to take with her for the day. When I looked, there was about six to seven purses, all filled with necessary "papers" ready to go out the door. We all love our purses, but taking six with you to work, just isn't that easy and when she is in a van full of friends, having that much "stuff" can take up a whole seat! I told her she couldn't take them all, which started off the defensive reaction from her. While she was eating breakfast, I tried to be sneaky and I took most of the purses she had and hid them. That wasn't very nice of me, was it? She proceeded to go upstairs to find more to fill her need. (note: Lindsay has lots of purses!) That in turn frustrated me more and I tried changing the direction, that taking that many purses was hard for her to carry and hard on her knee, which she has been wearing a brace on, for over a month. At which point, I looked at the brace and noticed it had slipped below her knee and was very tight. I told her we needed to take it off and change the brace, for which she said, no! She let me re-adjust it but wasn't about to let me take it off! Thus, more frustration, more lack of patience from me, which raised my voice level, which caused resistance on her part, which didn't solve either of our problems!

I have learned and re-learned that just walking away can be the best solution. She went to the front room with her purses, I cleaned up the kitchen and soon the van arrived. I walked her to the van, said my hellos to everyone and she found her seat in the van along side her 4 purses and lunch box. Yes, I was still frustrated but as the day went on, I thought about the morning and the impact it had. Was it worth it? Did it really matter if she took 4 or 6 or 8 purses to work? Although you and I wouldn't probably take that many purses with us for the day, she isn't us. Maybe it gives her comfort taking all that she loves with her for the day. Maybe she fills closer to home with them. Or maybe, she really actually needs all those 6 purses!

The day has turned to evening and soon it will be bedtime and in the whole scheme of things, it didn't really matter that she had all those things with her. She always seems to manage just fine, holding all those treasures! It made me realize that in our daily lives, we are sometimes quick to push our way of doing things onto others, our reasoning for why others should or shouldn't, when in reality, each of has our own valid reasons for the things we like to do. I am not saying it won't bother me seeing her take all those purses with her and as long as she carries them all and they don't become someone elses burden, then go for it, Lindsay!

Please remind me of this tomorrow morning when I see an abundant amount of purses going out the door tomorrow! :)

We all need something to look forward to

2010-09-30T08:20:00.000-07:00

We have all heard about the good of "staying in the moment". When we stay in the moment, we become more aware and when we are more aware, we get more from the task at hand. As much as this is true, we all need something to look forward to as well.

This thought came to me as I took Lindsay out to the van for her day program this morning. Every morning for the last couple of months, one of the guys has told me exactly how many days it was until he went to Disneyland. The concept of time may have been hard to understand but he definitely knew how many more days and he was so excited about going to California and that he might not come back because he liked it so much. Well, he just came back this week and on Tuesday morning, I opened the van and he didn't say a word. He was in the back of the van, head down and not a word when I said hello. I immediately knew that he was probably down, like we all are when we come home from a vacation. Today, however, I looked in to say hi and he told he was going to Denver! His excitement was back! I don't know the countdown yet, but I am sure he will keep me informed!

In her own way, Lindsay is the same. Her ability to countdown the days or have a concept of time isn't there but she is the first to inform people that she gets to "go to the store" when she gets home or when she gets to "go papas" or to see "my connie" or go "get burgers"!

As much as our kids with special needs can stay in the moment, they also like all of us, enjoy having something to look forward to. It puts a little more bounce in their step!

Wish I could let it go like Lindsay!

2010-09-23T20:23:00.000-07:00

Two blogs in one week! Just had to write about how I was feeling today!

We went to Target to spend a birthday gift card Lindsay received. Just so you know, she went straight for the purses! She knew exactly what she wanted.....SOLD! She had some remaining funds on her gift card so we shopped around the store and was in the "paper" isle when two high school aged girls came around the corner. They seemed to have a whip lash turning around to inspect Lindsay as we walked by. It was if I was watching in slow motion, wanting to react but was frozen. I am not usually affected by this but today, they giggled at her, talked in a whisper and went on their way.

Long ago I realized that when people aren't informed, they act out of fear or insecurity. While Lindsay attended high school here in town, we had an awesome experience with the students at school. Lindsay's peer companions learned from her and she from them. It was heartwarming and endearing. Today, I experienced something I haven't seen in awhile and maybe that is why I was so dumbfounded, unable to speak out and say anything. I can think of plenty I would like to have said but then, it would have fallen on deaf ears too.

That is why, I wish I could let it go like Lindsay. She never holds a grudge, she forgives, she loves and doesn't judge. She looked at the girls too and I wonder what she thought. She has excellent intuition and probably thought they didn't deserve another glance and whatever her thoughts, she continued walking to find the "papers" she so loves and didn't let it take one more second thought! Something I need to do!

Lindsay's mind and her stresses

2010-09-21T19:01:00.000-07:00

Last weekend Jerry and I went away for the weekend, thanks to our respite provider, Kelli! ( yes, another Kelli, with an "i") Having her stay with Lindsay allows us to go away without worrying about Lindsay. She works with her on a daily basis, knows her little habits, her likes and dislikes, shows compassion and care. Lindsay loves her and her family and has a great time with her, which is a very comforting feeling for us when family isn't staying with her.

Lately, we have learned that we don't talk about us going away, too far in advance in front of Lindsay. Long ago, we realized she understands more than we give her credit for and when she listens, she understands. She doesn't understand the concept of time but understands that mom and dad are going bye-bye and she isn't! She doesn't quite like that idea and I don't blame her! Not any fun when you have to stay home while someone else gets to go play. We love her so much but need that time by ourselves too!

When she starts thinking of us not being home, her mind starts going and going....like the energizer bunny. We see her sleep pattern go crazy, her organization skills go to the extreme and sometimes her seizures appear. It is frustrating for us as it adds worries for us as well. Should we go, should we stay, how do we comfort her mind, should we burden others with our situation? So many worries and stresses all around.
She worries about who is staying, where she is going, who is taking care of Babygrr, where is Taylor, when will we be home, who will wash her pajamas ( she loves her pajamas!) and more that we don't even know about! Her tv is usually on late at night and so is she, as she organizes her purses and papers over and over, as if that is her only control. Lately, she seems to be handling the upcoming change in her routine better but I know her mind is thinking constantly. To us, these worries of hers seem so little but to her, her world has being turned in different directions. We provide a safe and loving environment for her and when her routine changes, so does her comfort and her world as she knows it.

When we returned this past weekend, we didn't get the hug or the excitement in our return....instead, she was very serious, quiet and very focused. She sat on the couch and organized her paper, her coupons she cuts every Sunday morning for over two hours. I think it was her way of telling us, she was pretty pissed at us for leaving and wasn't in the mood to pick up where we left off! Then all of a sudden, like a light switch was turned on, she was back to Lindsay, happy and engaging.

I read a article in the Oprah Magazine lately about when things aren't going your way and nothing is working, to do nothing.....to relax, to rest and let those comfort feelings come back to you. I guess that was what Lindsay did. Her world over the weekend changed, her routine changed.....she relaxed with her comfort of purses and papers and rested until she was ready to realize that the normal comfort she feels at home with us was back and all was ok.

Then this brings up the concern for us......what do we do, how do we handle her long term comfort?.....a subject to visit later!

September 11th

2010-09-12T19:57:00.000-07:00

Yesterday I awoke and thought of Lindsay. September 11th is her birthday and it is also a date that holds so much emotion from nine years ago!

At 7 am in the morning, nine years ago, I was driving to play golf and on the car radio heard that a plane had flown into one of the Twin Towers. I vividly remember stopping at a traffic light, looking over to the woman in the car next to me, who was obviously listening to the same thing. I think we were both thinking, "WHAT! Say that again! " When I arrived at the golf course, everyone was watching the news and I recall the terror and disbelief in everyones faces. We didn't know then that it was not just an accident but a terrorist attack on our nation. Amazing that I remember so many aspects of that day, where I was at specific moments, talking to Taylor when he came home from school and going to bed feeling like I wanted to wake from a dream. Thankfully, we had celebrated Lindsay's 16th birthday with a party in our backyard the previous weekend, otherwise any celebration for her on the 11th may not have happened!

At 7 am in the morning of September 11th, 1985, 25 years ago, I was in labor! Lindsay was two weeks late and Jerry and I had arrived at the hospital the previous evening so that my labor could be induced. At 3:36 the following afternoon, Lindsay Rae was born into the world! When I first held her, with her head full of dark hair and big blue eyes, our dreams for her began and we welcomed her with love and kisses. Our world as first time parents was just beginning too! Learning to breast feed, late night rocking to lullabye songs, bath time and diaper time, it was part of something we had been planning on for 9 months! Everything seemed ok at first but as time went on, little things about Lindsay were different from others her age. Slight differences at first but more noticable as the standard milestones of developement were not achieved.

A medical diagnosis was not given until much later, but our world was thrown upside down when we found out that our dreams for our little girl may not be what we had hoped for. It was like planning for an extensive trip to Italy, doing all the research, planning, reading on your intended trip to Italy but then being told that we were landing in Norway instead. All of a sudden, our world looked a little different!

In retrospect, different hasn't been so bad. Yes, we would give anything if things were different for her, for us and we would love to see Lindsay achieve all those dreams we had for her. But on September 11, 1985, Lindsay was born and she has taught us things that we would not have experienced otherwise.

So, for the date, September 11th, we honor the lives that were lost in the horrific tragedy of 9-11 and also celebrate Lindsay, the fact that "she lights up a room with her smile, she brings sunshine to cloudy days and she spreads joy wherever she goes", words taken from a card she received. We love you, our Lindsay Rae! Thank you for teaching us to enjoy the little things, to be patient, loving and kind.

It's going to be a good day!

2010-09-07T10:24:00.000-07:00

It's Tuesday after Labor Day weekend and like everyone else, Lindsay wasn't real thrilled with returning to "homework", her day program. The normal routine of seeing Dad go to work on Monday morning and a day home with mom had been thrown off. In true Lindsay fashion though, she got up with a smile, slowly got dressed, brushed her teeth, hugged Grr and gathered her purses, yes, purses, ready for the day!

Even for me, the day came early and having an extra day to relax was nice. We were all slower this morning but no matter my mood, it changes when I open the door to the van and see it full of happy faces! Always smiling and ready for their day too! There is Tim, (names have been changed for privacy purposes) who gets out and opens the door for Lindsay with a smile and tells me that "yep, I still have my girlfriend". A big hand reaches out to shake mine every morning, and James asks me how I am doing and then tells me that he would really like to ask Lindsay out on a date, that I should think about it and more importantly, that it is 17 more days until he leaves for California and Disneyland. He then adds that he has written a song and will put it on a CD! I think I would really like to listen to that song. I didn't notice his knitting today, which he usually is working on diligently. He tells me he hasn't decided what he is making yet though. :)

Then there is Tony who loves sports, always tells me what team wins and loses and asked if Lindsay could come spend the night sometime. He told me another friend we know, a boy, did last weekend. I told him that it was nice of him to ask but Lindsay is a girl. He promptly responded, "oh ya, no girls allowed"!

Lindsay gets in, passes by Cindy, who she knocks in the head with her arm full of purses. Never a peep, just a smile and a sweet hello. I tell Lindsay I love her and will see her when she gets home. She is more excited that we will go get Grr treats at the store later. I look in to say goodbye to everyone else, and get waves for the day and I tell them to have a good day. James jokingly tells me "maybe I will, maybe I won't", with a big smile and proud of his sense of humor. I close the door and think to myself, "it's going to be a good day". How could it not be, all of you have started mine off with a smile and chuckle to my heart.

My Bobby 13

2010-09-01T06:29:00.000-07:00

On August 30th, Lindsay's brother, Taylor turned 21! She says "My Bobby 13"though.

There is a four year difference between them and she is the oldest. From day one of meeting him, she loved her "bobby"! She took the role of big sister very seriously, wanting to help bathe him, feed him, hold him and love him. I still vividly remember the day when Taylor was one week old. Jerry and I were in the kitchen and we heard this call, "ma". We went to the stairs to see her holding Taylor with her arm around his neck. Jerry and I looked at each other and simultaneously thought, "how did she get him out of his crib"? His little body was dangling, with his head held firmly in her arm. He wasn't crying and she had the proudest grin! She must have felt he needed our attention. To this day, we don't know how she managed to climb up into the crib, get him and get out of the crib! Yikes, the thought still scares me. Over the next few years, he watched and learned from her and she did the same.

It was when Taylor started talking that we noticed a change in her vocabulary. At that time too, we had started trying some sign language to help her express her needs and of course, Taylor learned some as well. They were buddies. Taylor called her Dede and she called him Tay. As time went along, Taylor seemed to know that Dede wasn't able to do some things and that she wasn't talking like he did. He showed patience and acceptance even at a young age and I know that although his mind wondered why, he seemed to know that Lindsay was who she was and loved her!

Taylor became involved in sports and Lindsay, one of his biggest fans. He also supported her as well when she played in the Challenger Baseball league. As many ball games as she has attended, she never hardly complained, except for a few times when she said, "no ball", as in, not another one! Nevertheless, she watched him in cold weather, hot weather, in sweaty gyms, in grassy fields, from golf carts to bleachers. She has been there, cheering him on! We played golf yesterday to celebreate with Taylor and Lindsay was there cheering him on! "yeah Bobby, get the ball.....oh, my Bobby"! If the video downloads correctly below, it is Taylor warming up to pitch in a game with Lindsay cheering in the background....."Oh,my Bobby"!

Yet Without A Word...or Lots of Words :)

2010-08-23T20:43:00.000-07:00

It was just past 10 pm and all of us were watching the news. Jerry, Lindsay, Babygrr and I. All comfy and cozy, ready to relax and unwind but when I think about it....unwind during the news?

Anyway, while settling in, Lindsay was in a very talkative mood. Every person that came on T.V., she would say, "I don't know her" and then that was followed by "I don't know her", then by another, "I don't know her"! Then it was "I want to go to the store, get beez, get pop, get boo"! FYI, Beez is gum. Her mind was working and thinking about the next day, planning it out in her mind. She started asking Jerry, "you go homework?". (Translation: Are you going to work tomorrow?) followed by, "I go homework?" (Do I have to go to work?) and looking at me and asking, "you home 2?". (Translation: Will you be home when I get home at 2?). The sports came on and then it was "get the ball!" (in a very loud voice)and "I want to call Bobby" (Taylor because she knows he loves sports) and during the commercials, she said, "I want to get my papa one of those". I am sure your papa would love a truck, Lindsay! That is very thoughtful!

It was non-stop verbal output! Jerry looked over to me and said, "you know, it is kind of hard to tell your daughter who doesn't talk much,to be quiet"! So true, but we did! Just so you know, it didn't work!

Lindsay's language has changed constantly over the years. She has words that she uses regularly and then those that she has used, never to be heard again! It has always puzzled us why she could say some words so clearly while another word that sounds similiar she wouldn't or couldn't say. Or how she can say a complete sentence, like "I want to get my papa one of those" but others phrases she won't. Why she counts 1,2,4,8,13 but won't say 3 but will say 13 plain as day!. Maybe she is secretly showing us a mathematical sequence no one knows!

When she was very little, she said mama, dada and jibberish, as we called it. She jibbered and jabbered, with much to say, all in her own way. Her big blue eyes, full of expression and animation, we knew what she wanted! Language as we know it was not there but when Taylor was born, she called him "Tay" but soon she stopped and he was then called "Bobby". Crazy, uh? We were perplexed. Around this time, Jerry wrote a poem to Lindsay in 1989:

YET WITHOUT A WORD

You love me unconditionaly, no matter what my mood.
You hug me when I least expect it and help me without my asking.

After a long, extended weekend and I'm depressed about returning to work, you meet me in the bathroom and happily watch me prepare.

Although, Yet Without A Word, you always show that you care. You're a special child, not like many others. I worry about you, but I realize that your differences are why are you are so special.

When I scold you, you pout and widely open your blue eyes expressing your desire for forgiveness. You pat your little brothers head and squeeze him so tightly almost pulling him from his seat. You show little jealousy as though you know that there is plenty of love to go around.

I love you my little girl and I'll not forget these times. Although they may not last forever, they will always be apart of me- these times we share together.
Dad - 1989

Seems like yesterday that she was Yet Without A Word but the other night, while trying to have some quiet time, She was With Alot of Words!

Angels amoung us!

2010-08-17T10:18:00.000-07:00

I had intended to write more about Lindsay's language and how it has changed over the years but that will wait till next week!

After last weekend when Jerry and I were able to go to Denver and have time for just us, I felt the need to say how blessed we are with those angels amoung us! They are the people in our lives who help us have those moments for just ourselves.

When you have children, you need babysitters! As your kids grow, especially kids with special needs, finding babysitters become more of an issue. Lindsay is almost 25 and it isn't as easy as calling the neighborhood babysitter to come down and watch her anymore. When we aren't with Lindsay, we need someome who is willing to watch her 24 hours, who is willing to help her in the bathroom, to assist with seizures if they happen, understand her language,etc. It is a big responsibility and one that Jerry and I pass along, which is hard to do sometimes. It is so comforting to know she is cared for with love and concern and that we are able to let go of our control if you will and "be".

I think of my dear friend, Eileen and her special needs daughter who needs more care than our Lindsay. I recently shared lunch with her and heard about their trip to Costa Rica,just her and her husband and the effort it took for her to get away. I listened to her telling me about her trip, thinking to myself, I know how precious a time it was for her, how we all need that time to refresh our relationships.

So whether it be family, friends, caregivers who help us when we need that little respite, Jerry and I say thank you. You are our angels as we release our care over to you for our precious kids.

Lindsay Language is contagious!

2010-08-09T11:48:00.000-07:00

Despite Lindsay's Chromosome deficiency,which has impacted her learning and language developement, she has no problem communicating!!

Lindsay has great receptive language and understands more than we think she does! Her verbal skills, however are limited to approximately 80 words BUT, she has some words that she has created that have meaning to her, that we call Lindsay Language.

From Taylor's friends, our friends and family, alike, her use of words and the way she says them, are contagious! If you have spent time around us, seen posts on facebook to friends or know Lindsay, you know what I am talking about. Her are some translations:

"BOBBY" - her reference to boys. ie: "Hi Bobby", which she says to her brother, Taylor or to any other boy for that matter!

"CONNIE" - her reference to girls. ie: "Hi Connie", even though it might be my sister, Wendi she is talking to. Girls are Connie's and boys are Bobby's.

"MECUR" - her medicine. ie: "I need my mecur"

"POR" - gas, money, bank, post office. ie: "get your por, mom" meaning get your gas, get your money, get your mail, etc.

"CACA" - sounds bad :) but means coffee! "You want caca, Mom?"

"YOURS ON" - meaning a tv show is on she knows we watch, like Oprah or baseball!

"I FEW" - I am cold, I am hot. You have to guess whether it is cold or hot outside to know which one she is!

"PUT PUT ON" - Put on a bandaid, put on lotion, put on jewelry, etc.

"GET GET YOURS" - a reminder to go get your.....glasses, book, purse, etc. She is our reminder! Tell her once to remind you to do something, you won't hear the end of it until you get 'er done!

"BOO" - her word for beer, butts and boobs and underwear! ie: "You want boo, dad?" or
"Oh, mom, your boo" meaning one of those other three are showing! :)

"SHE-SHE" - her grandmothers names are Shirley and Shirlee, so she calls them Sheshe.

In addition, there are her phrases she uses which most would understand, it is in her delivery that they become contagious. Such as, "you home?", "call your mom", "I want one of those","I want to go to the store!","I want pop!","I want my Bobby (brother)home" and a favorite of most, "you hot!". A favorite memory is when we invited new friends for dinner and Lindsay obviously liked one of them, pointed and said, "you hot"! She doesn't waste any time! When we are golfing, we love to have her keep our score. Walking off the green, she will say "you have 4 mom?" and I say, "I wish".

Even Lindsay has a cuss word too! I do want to say, we don't use the word that sounds like it in our house but after seeing the movie, The Fockers, she picked up that one! And she uses it appropriately too! Quite funny at first, we try to discourage that one!

I'd like to share a letter Lindsay got in the mail from a friend of ours. She was so excited to open the envelope and the letter reinforced to us, that Lindsay touches lives and so does her language!

"My dearest Lindsay,
Here's to all "hot Bobby's and Connie's". I love all those "fockers"! And here's to full tanks of "por". Not to mention, "give me 8" is way better than "10". I love when you give me "4" on the links. You're a great caddie.
I did "call my mom" today. I remembered to do that thanks to you! Tell "She-she" hi.
I think I need a "boo".
I love you and may God continue to bless you. You are wonderful gift from God to me and my family.
Love Lisa and all my Bobby's"

Jer and I smile when we hear Lindsay Language! It is one thing you won't mind catching!
Have a great day!

Things are sometimes not what they appear

2010-08-02T05:14:00.000-07:00

First of all, thank you for all the kind words of support from everyone! I started journaling years ago, thanks to my Aunt Barbara, who gave me a journal when Lindsay was 6 months old. So thankful for that gift, as it holds precious memories of Lindsay and Taylor! Moments that would have easily slipped my mind otherwise.

In my first blog post,I shared a journal entry from December 2008. To follow up, I'd like to share with you about our day on January 4th, 2009.

It happened to be another Sunday morning and I was reading the paper, enjoying a cup of brew and heard a scream! I ran upstairs to find Lindsay having a terrible seizure. It was not like one we had ever experienced before. It was terrifying to watch and it seemed to be never ending. Even more disturbing was when the seizure stopped, she wasn't able to speak or react to us. She had a blank stare, was non-responsive and had also lost control of her bladder. Jerry had called 911 and by the time they arrived, Lindsay had started responding to us but then had another seizure while they were taking her vitals. I can still remember the three of us, Taylor, Jerry and I standing there, all with a blank stare as well. So surreal, was this really happening to our Lindsay?

As we followed the ambulance to the hospital, I had an "aha moment"! That morning in December had to have been just like this one! She had a bad seizure and we didn't know about it! Which terrified me in another way! She had experienced something tramatic that December morning, couldn't verbalize to us what had happened and then the frustration began for all of us as we tried to understand the way she was acting. She wasn't being stubborn or embarrassed, wanting things her way. Her body and mind were still reeling from a seizure!

Thankfully, to date, we have not had any more Sunday mornings like those. We have friends whose children experience those type of seizures often and I can't imagine!

I have heard the saying "to be kind to those around us" because everyone is experiencing something in the thier lives we may not know about. We can be quick to judge or to think we know why, but in reality, things are not always what they appear to be.

Have a happy day!

My journal entry from December 2008

2010-07-28T13:17:00.000-07:00

I came across the following journal writing from December 2008. I have been wanting to start a blog about our life with our daughter and thought this would be a good start.

What makes my life story any different than the average wife and mom with two kids, a house, a dog? That little voice inside my head tells me "not much", but the voice in my heart knows differently.

I first started thinking about my life story when I was asked by my son to proof read his college entrance essay. He chose to write about how it was like growing up with a sister with special needs. In reading his essay, I learned some things that he had been thinking but had never expressed and it made me proud, happy and sad all at the same time. He is only 18 years old and his life has been shaped by experiences, as is everyone's, and it makes up part of his story. It made me realize that if his life was already so different than that of his buddies, mine is too!

Most days I don't feel different than any other mom out there. You love your kids, you do whatever you can for them, care and nurture them and always try to do your best. Then there are those days where I feel all alone, like I am the only one who experieces these feelings of loss, of sadness, of frustration and yes, of anger. I feel ashamed of these feelings and I usually have a self talk that helps them pass but they creep up every once in awhile to remind me of MY story, my life and why it is mine.

One of those days, is today. It is Sunday, a day to sleep in a bit, read the paper, enjoy a quiet cup of coffee. I go in to check on Lindsay and she is lying in a puddle of urine and refuses to get up. She is so strong and stubborn that trying to get her out of bed is a feat in itself. I know down deep she is embarrassed at what has happened and is unable to verbalize her feelings, at the same time, I feel myself getting more frustrated at the thought that she won't help herself. No reasoning, trying to change the subject or anything seems to work. She finally gets up but refuses to take her wet clothes off and shower and sits on the floor in protest. The one side of my brain is telling me to leave her alone, close the door and ignore her behavior. The other side is telling me, she is getting the floor wet, the smell, the mess, etc. That right thing to do and the other right thing to do, in my mind! By this time, Jerry is up and trying to help. She continues to fight, getting more stubborn and aggressive with each suggestion. I find myself going into the other room and taking a big breathe to calm down, knowing that all of us are getting frustrated. We realize that it is time to close the door and let her be. Jer and I hug each other and say "what has gotten into her"? We know that we won't ever know what has triggered her acting this way. Something set her mind in motion; Taylor not being home, being tired, having to go to "homework", being away from home over the weekend, etc. So many things to cause her meltdown and so many reasons why we will never understand her inner frustration.

Later, I go to check on her and she is lying on the floor with her head on her pile of papers and purses, with her arms crossed over her chest and she is sleeping. I look at our little-big girl and shake my head, at her ability to fight for her right to do as she pleases without using words. She awakens and comes to me, almost as though nothing has happened and now willing to take a shower and change clothes. She knows I am upset and uses her sweet manner to help me refocus. She is good at that! I have come away knowing that it was a battle of wills and she won. Yes, I hate to see the stain , the smell, the mess, the inconvenience but I know in the end and in the whole scheme of things, it was just a learning experience and it will be okay.

I realize that although each of us have different experiences with our children, that all parents have those moments of frustration, of battles of will and it doesn't matter if your child is disabled or not, we all have been there. I know it is ok to feel my emotions, that we do our best and that sometimes the best isn't what we have done. All we can do is learn from it and let it go, so that the next time it happens we can do better.