*SPARKLE*

Ray and I usually go to the grocery store on Friday nights. It is funny because we consider this a "date night" and we love roaming different stores and looking around. Sometimes we might take one of the kids with us to spend some one on one time with them and keep updated on their life and get a chance to talk to them without the siblings around. Tonight was Raymond's turn because the girls were off babysitting. We can not go anywhere with him without running into someone he knows. Tonight was no different. We were shopping at Smith's and he saw a family out of the corner of his eye. He gets a little nervous and quiet...anxiously waits for them to say "hi" or start a conversation with him. More often than not...a hug or two is involved. This sweet lady is the sister of one of the school aids that works with Raymond. I wish so badly I would have asked her name. I started a small brief conversation with her and she had tears well up in her eyes as she talked about my son. She said to me "Did you know he is my Sparkle? That is what I call him...Sparkle" What a fitting name for him! I can't help but think about his wonderful smile, cute face, and tender heart. How lucky I am to be his mom. She went on to tell me that she gets to spend some time with him on the playground at school and how jealous she is that her sister Miss Tammy gets to spend the whole day with my sweet boy. It is amazing the impact that Raymond has had on so many people. Everyday I hear stories of how he has made a difference in someone's life. Most of the time it is about all the happiness and goodness that he has to share. Thanksgiving is next week and I am so thankful for MANY things. Tonight I was so happy and grateful to hear the story of Sparkle.

LoTs Of SuNsHiNe

We are BLESSED to get to spend our Saturdays being a part of the Miracle League in West Jordan. The field is designed for wheelchairs and kids with special needs so that they can enjoy the game of baseball. Let me tell you...it just DOESN'T get ANY better than this!
















It rains sunshine...EVERY WEEK!
These sweet kids think they are playing in the Major Leagues and for one brief moment in time...they are.

Blah, Blah, Blah

It has been quite some time since I have updated my blog. I use this as a place to journal and keep track of my feelings and how things are going in my life. It just feels good for me to write things down...the words seem to come easier for me this way. Since January I have been obsessed and so focused with weight loss and trying to find the "healthier" me. Well here it is 5 months later...my goal was to have lost 40-50 pounds by June. I have been so disappointed with the results from my efforts. I was not feeling well about 2 weeks ago...I had Mastitis and the lymph nodes in my armpit were inflamed. I headed back to the doctor just shortly after my hip pain and physical therapy and I just kept thinking to myself...What next? I am a firm believer in "everything happens for a reason". I am actually quite grateful that my infection happened because I have been going through some testing to find out what is going on with me. I am tired and run down ALL of the time. It takes everything in me to go to work and try to attempt to be a part of my family. My house is a wreck...dust and dirt galore...laundry is not caught up...and this makes me even more depressed. I really like to have a nice clean tidy house and I just can't find the time or energy to get it done. I got my test results back and I am so happy to know that there has been something wrong with me and it is not just in my head. I wasn't sure if I was just depressed or what. I have battled depression before, but this seemed different. I found out that I have Mono and I have had it for 3-4 weeks. My potassium level was too low. My B-12 level was low and I have been getting B-12 shots to help with that. My vitamin D level was scary low...I am in the Rickets stage and require a Vitamin D prescription to try to reverse that. I apparently have not been taking good enough care of myself for quite some time and that is going to have to change. I am working closely with the doctor and I feel that things are going to get better soon. I just have to be patient. Apparently when your body is sick like this it just holds on to everything it can and so my doctor feels that this is part of the reason I have not seen the weight loss I would like. I have been put on restrictions for some of the exercising I was doing. I really miss my Zumba class. I miss going to Jazzercise. I miss my time with Amy at water aerobics. I just have to take it easy for a bit until my energy can get back to normal. I just hope it doesn't take too long. :)

04-26-99

This date 11 years ago...absolutely changed my life. My son came into this world weighing 8 lbs. 1 0z...three weeks early. My world has never been the same.

My girls are amazing and I had them 22 months apart...dressed them alike...and relished in the thought of all of my dreams coming true through my children. I always wanted to be a mom. I always wanted a girl that I could dress in cute girl clothes with all of the accessories and to take shopping with me. I got all of that times two! I know that I talk so much about Raymond and I never want the girls to feel that this blog is only about him...but it is my way of keeping track of my thoughts. Words come so much easier for me when I write them down.

So back to my original thoughts:

Raymond was born and was given a perfect 10 on his apgar test. Yup...a perfect 10. I think I still have it written down on a paper in a box somewhere. He was this beautiful little red-headed boy that came into this world to complete me. I did not know that at the time...however. We were lucky enough to get one beautiful red-head...but 2...how lucky am I? That was all I could talk about the first night I had with him...his red hair, chubby cheeks, and the cutest hands and feet. By the next morning my world started to change. He would not wake up at all to eat. He was just happy to be sleeping all of the time. I remember the nurses coming in and wiping his face with a cold, wet, washcloth to try to get him to wake-up. He never cried. Didn't make much noise at all. They had taken some blood tests and some hearing tests, but the doctor did not let me know about all of this until after we had taken him home. She did not want to alarm me until she had more information to go on. He had jaundice just like his sister and was sent home in an incubator light box for his biliruban levels. I was worried so much about this because I did not want him to go through a blood transfusion like Kaitlin did. Her situation was scary enough as it was and here we were going through it again for round two. I had such a strong feeling that something was just "not right" with Raymond. Everyone kept telling me everything was going to be OK and we had already gone through this once, but I just could not shake that something was really wrong with him. He started having seizures much more frequently, but any time we would sit in the doctor's office waiting for another "episode" to happen...I would give up and go home. My best friend Diane was visiting and was holding Raymond and she had him in her arms for his first grand mal seizure. I immediately called his doctor and she sent us over to Children's Hospital in Denver for observation. By the time we got to the hospital she had made arrangements for him to be admitted instead of just waiting in the ER. I am so glad it worked out this way because he did not have another seizure until the next morning. Ray and I had gone down to the cafeteria to eat some breakfast and we had a beeper with us. We didn't even get to sit down and eat our food when the beeper went off. We ran back up to the ICU and the nurse that was looking over him had tears running down her face. She was the sweetest thing. She said they are trained to be so tough in these types of situations but she had never seen a baby have a seizure like that before. She kept apologizing to us for her tears. Apologize...there was no reason to apologize for being human. My heart was sad, but so relieved...FINALLY someone had witnessed his seizures besides me. I was not alone in all of this anymore. The next days were test after test trying to figure out what was going on with him. His body could not absorb B-12, which is protein, he spent the first 6 months of his life receiving adult size B-12 shots just to keep him alive.

We sat in a room with a metabolic specialist and a genetic specialist to explain to us what his future would hold:

In the first 6 months of his life we were told all of the following:

He would never walk

He would never talk

He would be deaf

He would be blind

He would require a special diet

His seizures could deteriorate his brain and brain cells

His life expentancy was only 5 years. Today we are celebrating his 11th birthday! I witness a miracle on a daily basis when I see my son. He smiles, laughs, walks, and runs. He has surpassed any and all of our expectations and continues to do so on a daily basis. He has taught me more about love and patience than I ever thought was possible. It is the simple things in life with Raymond that brings us so much happiness. We don't sweat the small stuff and we laugh at life together!

Happy...Happy...Happy Birthday Raymond!!!

Tolerance

I have been thinking alot about TOLERANCE. On Saturday afternoon I ventured out of the house to do some grocery shopping. I wasn't feeling very well but I just wanted to get out of the house for a bit. I knew that I could use a power scooter to get around Walmart and not have to be in pain walking around the entire store. I am so thankful that I have 2 legs and normally I do not have to depend on other means to get around. I have so much respect for those who require assistance to do some of the things that we take for granted on a daily basis. It was amazing to me how rude people can be when you need assistance. They were in this hustle and bustle hurry to get wherever it was they needed to go. Somehow I was in the way no matter where I turned. I couldn't reach things on the shelf and I would have to wait until Ray or Jessica were there to get the items I needed. People would give me dirty looks and seemed angry at me for being in their way. They don't know me...they have no clue the type of person that I am...they know nothing about me, but yet they were angry and frustrated with me. It broke my heart.

This can happen to our family pretty often...you see...my son looks so normal...but he is not normal. He knows nothing of personal space. He will walk right in front of people at the store and practically get run over by their cart. He can get in the way and step on your toes. He doesn't realize that a moving car could injure or kill him. I feel like I am constantly hanging on to his hand or his shirt collar just to keep him safe. I get those same kinds of looks when I have Raymond with me. Those looks of disgust if he runs into someone or steps in front of their cart, or just gets in their way. If the looks were translated into words...well I just couldn't bare to think what they would be saying. I always try to smile and politely say I am so sorry...but they don't seem to care or understand why I am apologizing. People are quick to judge. They assume that I have an out of control child that needs some serious parenting and they would love to give me some advice on the matter. When Raymond was a baby, he did not have the core strength to keep himself upright in the cart, he would always lean to one side, and he was not very happy in the cart. At that time he was having frequent seizures and I didn't have the heart to leave him at home in anyone else's care. He would scream with frustration because he couldn't stay up. I had a woman come up to me while I was grocery shopping and told me I should leave the store and come back when I could finally control my own child. "Can't you just shut him up" she said. I was a coward and left the store...trying to fight back the tears until we were alone in the car. Raymond is almost eleven now and I have much thicker skin where he is concerned. I had a hard time at church one Sunday a few years ago, when I had Raymond in the restroom with me because Ray was not around to take him in with him. I couldn't just let him go into the restroom by himself without any help. Once again I got a look of disgust as I was assisting my son. My thoughts are different now and I am not afraid to say something like "You have something to say to me...SAY IT!" Whoever created the "family" restrooms are such a hero to me. Most every place we go now they are available and I am so grateful. It is funny how these simple things can make such a difference in our life with our special needs child. There are so many other rude stories I could tell you about our experiences with Raymond...I could go on and on. It really doesn't matter though...

Just try a little harder to accept people and their disabilities. Give them a warm smile to brighten their day! They have so much to offer us and we can learn so much from them. They just want to be accepted and most importantly they want to be loved. They also have so much love to give. What could be better than that? I often tell people when they ask me why I am so positive and so happy all of the time...If I could let them have Raymond for just one day...they would see a different world and they would never ever be the same.

One good thing

So I have decided that one good thing will come out of my injury. I try to find the good and positive in all things. While I am recovering I am going to work on my blog and add some of the pictures that I have been wanting to add. I am also hoping to get some crafting done during the process as well. I was looking at so many pictures of the kids and I just started cracking up when I saw this one. This is Raymond's attempt to stick out his tongue for the camera. Let me tell you...it takes alot of thought and concentration to get this face. He really has to think about it :)

Note to self:

Time to remove the date stamp from the camera before taking more pictures...lol

The date on Jessica's picture on the side is totally wrong...that picture is not 2 years old...it is much more recent than that :)

Softball

Kaitlin officially started her softball season last night! It is fun to see her get so excited about something that she truly loves. Our family loves to go to her games and cheer her on. I think it is so important to always be your children's biggest fans! She has so much natural talent in sports and has always been quite the tomboy in our family. I love to watch her play! She would play tackle football if I would let her...she is too funny! Good luck this season Kaiti! I love you!

My little Rainman

Raymond is absolutely obsessed with country music right now. When he gets something in his head he just can't let it go. We have gone through many different phases with him: sports, video games, food network, collecting books, and now he has discovered CMT and GAC. He started getting addicted to the Weather Channel...yes, the Weather Channel. Thank goodness that one did not last very long. He was constantly talking about tornados in Omaha and Hawaii. I am glad that phase was short-lived for sure. He has always loved music. He is not autistic but he always reminds me of the movie Rainman. He dances like he does..side to side...with his radio in his hands. If he is not watching country music videos on the TV, he is listening to songs through the computer. He is such a joy to watch. I was watching TV in bed last night and Raymond had his headphones listening to country music through the computer...sampling different songs from different country artists...and he was singing. The words weren't clear, but the melodies were...it just made me smile! I could watch him all day long. He is the funniest kid. I love to hear him sing. I don't think he even realized that I was listening to him so intently and that I was smiling and lost in his world with him. Do you remember how Rainman loved Kmart...that is how my Raymond is with Walmart. Rainman had to watch Judge Wapner everyday...that is how Raymond is with TV in general. It brings him some sort of comfort. When we go to Walmart Raymond always has to get a "treat" of some kind. He buys himself a new CD every Friday and I suggested that maybe he needs an I-pod for his birthday next month. My little Rainman is growing up and I am thankful each and every day that I have him and his little quirks! I get to see Jason Aldean on Friday and I don't even have the heart to tell Raymond I am going without him. That just might break his heart. :)

Jolly Rancher

I had not intended for this blog to be so serious all of the time. I don't want to bring people to tears ALL of the time...although I truly believe that tears are healing to the soul. :)

So here is a cute little story:
Raymond was riding in the van with my parents coming home from my cousin's wedding reception. He had a Jolly Rancher candy in his mouth and was trying to tell his Grandpa something very important. He repeated himself twice and was saying the exact same thing each time, but his language is difficult to understand sometimes. My dad asked him again what he was trying to say. Raymond was so funny! He spit that Jolly Rancher out of his mouth into his hand and continued to say the same thing again. The exact same way as before! Ray and my dad were laughing so hard because the Jolly Rancher was definitely NOT the problem here...they STILL could not understand a word he was trying to say. All three times the words came out the same way in his "gibberish" kind of language that we have all come to love. After a car full of laughter...we still do not know what he was trying to say.

Ups and downs

Today was a tough day for me. It is hard to put into words the feelings that I have when it comes to my sweet son. His body is growing up and maturing into a young man. He is growing taller and he has the most amazing sweet spirit about him. His smile can light up any room that he enters. He can make even the darkest of days seem a little bit brighter. He will always have a "little boy" brain...he was born into innocence and he will leave this world in innocence someday. I am responsible for his safety and his happiness during his time here on earth. I can't believe that I have been entrusted with such a gift...me...who would have thought something like this could happen to me. There are some days that I look at him and he seems so "normal" to me. There are also the days that I look at him and he seems so lost in this world. I celebrate all the small milestones that he reaches. It is the simple things in life that matter in Raymond's world. I will never forget the day, about a month ago, when his teacher texted me and told me I needed to check my emails immediately. She had sent me a video of him writing the letter "R" for the very first time. I was jumping up and down! I couldn't believe what I was seeing. For so long...his teachers, aids, and therapists have been trying to get him to write. This is a difficult task for him and he did it! As we celebrate in the ups...we have to prepare ourselves for some downs. Sometimes new skills are short lived in his world...it is as if new skills are forgotten as quickly as they appear. I am thankful for the special moments that we have with him. I don't really care if he will ever be able to write an "R" again...I was able to see it once and that is enough for me. His brain is not complete...it never will be. Doctors and specialists can't explain why his brain works the way it does. They can't fix it and make it better. The only thing that matters is that he loves me and I love him! I don't think that I could ask for anything more than that.

Our "Ray" of Sunshine

My main reason for this blog is to make a keepsake for my family about our life with our "Ray" of sunshine...Raymond. There are so many milestones that I want to be able to remember over the years. We rejoice in all of the little things that he does. It is amazing to see the world through his eyes. When I look into his eyes I swear that I can see into heaven. This blog is dedicated to him and my thoughts about what it is like to be "Raising Sunshine"...

Inspired

I have been inspired by so many blogs and people lately. I would love to inspire others in my blogging, but to be quite honest, I am doing this for me...myself...and I. I am hoping this might be therapeutic for me. I have battled depression and a weight problem for so many years. Last year I kept telling myself...this is the year...I am going to get the weight off and focus on myself for a change. Well let's just say...alot of it was so much talk and no desire to really make the life changes that needed to take place to reach my goal. I have a wonderful life, but my heart would break every time I would look in the mirror. When did this all happen??? How did I let this all happen??? Why had I given up on myself and my talents??? Why have I let myself go??? I have a lot to offer this great big world and THIS WILL BE THE YEAR for me to make those changes. I started taking a Zumba-Latan dance inspired aerobic class twice a week. I finally found something that I really enjoyed! I think it is so important to find something that clicks for you when it comes to exercise. So to date I have lost 23 pounds since last November and I am feeling fabulous! I have some pretty amazing friends and family who have been a huge support in keeping me focused on all of my long-term goals. So today I am feeling pretty blessed and happy! There is sunshine in my soul today!

My first blog post

I love so many things about all of this social networking. I love Facebook, but I feel that I have so much more to say...more than what can fit in a small thought box that only holds 140 characters at a time. Join me in laughter, smiles, and maybe even a few tears along the way. I want to take you through my day to day journey as a mother of two beautiful girls and a special needs little boy. He is my sunshine...my only sunshine...he makes me happy...Everyday!