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 :)