Silly Raymond

The quality of this video isn't great but you can check it out to see Raymond laughing at Isabella.

Until Next Time!
Lots of Love,

Erica

31 for 21 Campaign Wrap-Up

The 31 for 21 Campaign is over today. I've had fun telling you a little more about Down Syndrome and other related topics. I hope you've enjoyed reading about it and maybe even learned a thing or two. I will try to keep posting as frequently as I can. I would estimate that to be about once a week unless I've found something worth sharing. Thanks for hanging in there with me!

Until Next Time!
Lots of Love,
Erica

02-15-2009

I've been saving this post for the end. It's about the day Raymond was born.

Raymond decided at 3:32am he was ready to make his appearance in this world. His heart stopped beating and I was being frantically rushed to the operating room. The nurse, Bridgette, called Chris and told him to head over to the hospital right away (very calmly amongst all the ciaos). After a lot of pulling and tugging, the doctor was finally able to get Raymond out. He was whisked away and then brought back in to us for only about 10 seconds. I remember thinking he didn't look as sickly as I expected for being born 10 weeks early.

I went to recovery and about three hours later I was taken in to see Raymond. The nurses wheeled my hospital bed into his private room in the NICU and put me right next to the incubator. We weren't able to touch him. So I stared instead. The NICU doctor came in to talk to us and I heard his voice but was listening to nothing he was saying. Remember watching Charlie Brown as a kid? Remember how it sounded when Charlie Brown would talk to him mom? Well, that's exactly what I was hearing. Then something he said caught my full attention, "Down Syndrome". What? I interrupted him and asked if he was telling me he thought Raymond might have Down Syndrome. He said, "No. I'm telling you Raymond has Down Syndrome." I was immediately, well, devastated. I didn't realize it at the time but Chris had already been told. All I could think was that people were going to be so mean to him. That I would watch him die. That he would never be a productive member of society. That I didn't want a child with Down Syndrome!

All of these thoughts made me feel like a horrible person and worse yet a horrible parent. (I recently read an article in a magazine by a mother who said if she and her husband knew in advance that their daughter was going to have Down Syndrome, they would have aborted the pregnancy and she knows now how much of a mistake that would have been. What a brave admission!) My brother arrived at the hospital and the nurses asked if it was alright if he came into the NICU. Of course it was and when he walked in he could see I was visibly upset. I'm sure he thought it was because Raymond was so tiny. I tried telling him the news but I couldn't say the words. I couldn't say Down Syndrome. I looked at Chris and said, "You tell him." When Chris did I cried hysterically all over again. My brother had to step away for a minute, it was a lot to take in for everyone, and the nurses were doing their best to comfort me. Truthfully I just wanted everyone to go away (other then Chris and my brother). Not long after a nun came in to the NICU room to see if she could be some comfort. She tried saying things that she thought would help (all while calling Raymond a "she") and I wanted her to leave SO bad. I didn't want to be rude to her but it felt like she was in the room for an eternity. In reality it was probably only 5 minutes.

The nurses took me to my room down the hall so I could try and get some rest. Later that night when I went back to see Raymond, the nurse snuck him out of his incubator for about 2 minutes so I could hold him. It was like holding nothing. He was so tiny. When he was born, Raymond weighed 2lbs. 13ozs. He dropped down to 1lb. 8ozs. I think Raymond was almost two weeks old before Chris was able to hold him for the first time.

Over the next few days we watched and wondered what was going to happen with our little Raymond. We made the decision to have him baptized in the hospital. So when Raymond was 5 days old, Monsignor Baddick came to the NICU and baptized Raymond. It was a decision that we are grateful to have made.

This is only a VERY small portion of what I was feeling over the coarse of those first few days. I will probably come back and read this later and think of a thousand other things I should have included. In hindsight I realize that I was morning the "death" of the child I thought I was supposed to have. "I thought I was supposed to have", isn't that an interesting statement? We really never know what we are supposed to have. We can only trust that we are given what we can handle. Whether you know it at the time or not.

Here is a list of what Raymond has been diagnosed with, was or is currently suffering from, and other miscellaneous issues:

• Down Syndrome
• Leukemia
• Detached Retinas
• Hearing Loss
• Chronic Lung Disease
• Collapsed Lung
• Hole in the Heart
• Chronic Aspiration
• Hernia's - 2 in the Groin and 1 large in the chest
• Seizures
• Eating through a G-tube
• Continual use of oxygen until 14 months old
• Multiple surgeries
• Multiple bouts of aspiration pneumonia
• Multiple at length hospital stays

Please never overlook your child's good health. With that being said, it might seem like a long list but our situation could be SO much worse. We are lucky. Raymond has his up and down days but at least he's here. At least he's not confined to a wheel chair. At least he isn't totally deaf. There are thousands of these "at least"s. So many people focus on the negative. I even think some people enjoy focusing on the negative and having a pity party for themselves. That's not in my nature. That only makes things worse...for everyone. It's life...get over it. That's just the way things are going to be! Put your best foot forward and keep going. That's what I do. I'm always grateful when friends and family share articles and information that they come across on and about Down Syndrome (I normally find it first though!). It doesn't always apply to Raymond but it's nice to know they are always thinking of us and want to help expand our knowledge and understanding of Raymond's diagnosis. What great support!!!

I also don't compare Raymond to any other child (even other children with Down Syndrome). He's almost two (yikes!) and he can't sit unsupported by himself yet. Okay. So what? He will in his own time. He wants to and he sure does try. I know he will hit all the miles stones like other children, with or without Down Syndrome, eventually. I'm proud of the progress Raymond makes everyday. I love him just the way he is. He has brought so many wonderful people in our lives that I would have never met otherwise. It might sound a little corny but he is the gift that keeps on giving. He gives me hope, unconditional love, a positive outlook and an entire book of other things. Now that's being blessed!

Until Next Time!

Lots of Love,

Erica

A Worthwhile Documentary

Why are people with disabilities so strange? Why do I feel so uncomfortable around them?

These are common feelings among those who aren't exposed to a person with a disability.

Brave in the Attempt endeavors to break through the barriers of perception that alienate those with disabilities from the rest of the population. How someone looks and sounds on the outside may not predicate who they are on the inside.
Often humorous and poignant, this feature documentary follows a basketball team of 15 young athletes in their quest for Olympic gold. Though they may have disabilities, they have the same desire for competition we all do. Some want to win very badly. Some are better athletes than others. Some don't like sports at all. In other words, they are just like everyone else.
Throughout the journey, the athletes with their coaches and families, give us insight into the challenges facing those with disabilities while showing us just how capable they really are. Through their tournaments, social events, work and school we get a glimpse into their lives as well as how to build a team.
I hope this documentary will be a great first step to introduce everyone to the disability population, and how normal they really are.

The Next Showing of Brave in the Attempt is on Sunday, November 7, 2010 @ 9:00PM EST on the Documentary Channel

DISH Network - Channel 197

Direct TV - 267

Until Next Time!
Lots of Love,

Erica

Music Video

This music video is very cute. What a sweet big brother! I hope you enjoy it!

Until Next Time!

Lots of Love,

Erica

A Common Question

A very popular question that I am asked is whether or not any future children that we have will have an increased chance of having Down Syndrome. The answer is is yes...by 1% Our chances have gone from a whopping 1% to a 2%. So in my mind I say no but scientifically yes there is a very small chance.

There are three types of Down Syndrome. The most common of the three types of Down Syndrome is often referred to as Trisomy 21 (this is the type Raymond has). About 95% of people with Down Syndrome have this. This type of Down Syndrome occurs because of an error in cell division. The error happens either before or at the time of conception. What happens is that a pair of the 21st chromosomes in either the egg or the sperm do not separate properly. This extra chromosome is then found in every cell in the body,thereby causing the characteristics of Down Syndrome.

Mosaicism occurs in about 1-2% of all people with Down Syndrome. In this type of Down Syndrome the error in separation of the 21st chromosome occurs in one of the first few cell divisions AFTER fertilization. This causes the fetus to have some cells with 46 chromosomes and some with 47. The cells with 47 chromosomes have one extra 21st chromosome. Because of the fact that not all cells contain the extra chromosome 21 the range of physical problems varies depending on the ratio of cells with 46 chromosomes to those with 47 chromosomes.

Translocation occurs in approximately 3-4% of babies born with Down Syndrome. In this type of Down Syndrome a part of chromosome number 21 breaks off and attaches itself to another chromosome. Often this is chromosome number 14. This causes all cells in the body to have the extra piece of the 21st chromosome. When a child is born with this type of Down Syndrome it could mean that one of the parents is carrying chromosomal material that is unusually arranged.

If you have a child with Translocation Down Syndrome your chances of having another child with DS increase by 80%. If Raymond had that particular type of DS, I can't say in all honesty that we would be having another baby. I'm just not sure. My feeling now is if our daughter is born with DS, then it was meant to be. But if I had the information telling me the risk was that great, I'm not sure what we would do. Also, if you're wondering, men with DS are unable to father children. There has only ever been two documented cases of an adult male with Down Syndrome fathering children.

Until Next Time!

Lots of Love,

Erica

Charity Navigator

Charity Navigator is a trusted website you can go to to make sure that the organizations you are giving money to are reputable. It also has a breakdown of how the funds are used. Click here for an example of what you'll see when you find a specific charity. I've selected the National Down Syndrome Society as an example. Also, if you have an organization which is looking to raise funds, you can request it be added to the site and a proper evaluation will take place.