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!