Pigs take the Pidgeons down, temporarily!

These past few weeks we have been inundated with illness in our family. Swine flu has invaded our children. Aliza was the first to succumb to the illness. Thankfully the pediatrician put her on antibiotics at the very first sign of illness. As a side note, I am so thankful for our wonderful pediatricians. We have developed such a great relationship with them. They are terrific listeners and do a wonderful job of calming my fears about the what ifs of our kids complicated medical issues. So back to Aliza... She had a fever for three days, a cough and runny nose but all of it went away by the third day on antibiotics and did not expand into a worse illness as it has in many other kids with swine flu. On Aliza's third day of fever Trevor became sick. He had a high fever for 7 days. Finally one the 7th day we took him in to see the doctor. Right away she could tell he was really sick and took her time to listen to his chest and make a thorough diagnosis. Trevor had pneumonia. I was quite surprised because he was not coughing a whole lot, but he also was not getting any better after such a long time of being sick. Trevor started on antibiotics and within 3 days was much better. Still very tired, but his appetite was coming back and his color was better. Three days into Trevor's fever Ella came down with a fever. Her fever was not nearly as high as the other kids. She had a cough, runny nose and fever that lasted for just 2 days without antibiotics or additional intervention. The doctor took a listen to her when we went in with Trevor and her chest was clear. So now two weeks later, everyone is back to school and healthy again. It has been a long two weeks. The television is tired (too much TV while sick) and we have been able to air out the house, wash the bed lines, disinfect the bathrooms and surfaces. We have made it through this really early flu season, gotten knocked down, but not out and we are stronger, immune to the swine flu and ready tackle the next challenge. Aliza has gotten her swine flu vaccine, but it is not available yet for the other two. I originally thought that I would not get it for the kids, but our doctor felt it was important for Aliza and I agreed. I would never forgive myself if she became seriously ill from swine flu after I decided not to get her the shot. Better to be safe than sorry.

Our "Normal" Life

This has been a very busy summer. Unfortunately for the kids, it was a somewhat ho-hum summer. We didn't take a family vacation or do too many exciting things, and now the summer is over and school is starting in a few days. The benefit of having a father who is a teacher is that the kids get to spend a ton of quality time with him. The downfall of having a mom who is a real estate agent is that when daddy is not working, mom usually is working. Which leaves very little time for us as a family, which I very much regret, but know that this is what is important for our family right now. For the pasts few months I have been very busy with work, being a real estate agent, working part time at the local YMCA so that we can get our membership benefits, and putting time into our Down syndrome awareness project, http://www.321downstreet.com/, so when I have time with the kids my mind feels occupied with so many other things. I just keep telling myself that soon, this too will pass (the busy feeling) and life will be back to normal (whatever that may be???)

I know to many people our "normal" life seems so un-common and chaotic. But for us, it is typical. I know that we were meant to have this life and we make the most of everyday with our kids. I can honestly say that I have only once looked at our life with regret. Two days after Aliza was born I was very emotional and feeling overwhelmed and angry at God for choosing me and Tom to raise a child with Down syndrome. I remember feeling so sad and sorry for myself but also for her and for the struggles that she would have in her life. I was not sure that I could rise to the challenge that I had in front of me to parent this child. We were sitting in the driveway of our home, I had just been discharged from the hospital, but our baby was in the NICU. We had come home with out her that evening and we were only home for 3- 4 hours when in the middle of the night I woke Tom up and told him that we needed to go back to the hospital to be with our baby. I was going to sit at her bedside night and day until she came home with us. It was at this moment that I realized that nothing was going to stop the bond that I had already developed with this little baby. She was ours, and I loved her and we were going to get through this (the unknown) together. For years I felt so horrible for feeling those feelings of anger at her diagnosis, but now I realize that these feelings that day have gotten us to where we are now. It was that day that I committed to giving her the best that I possibly could. We have fought to get her the best therapy, education, and services that are available. And while we acknowledge that her ability to achieve in comparision to her peers is delayed, we also know that we can not just sit back and accept a mediocre (our definition) life for her.

Together we chose to bring her into this world; she is strong and has survived many physical challenges, including open heart surgery. To us, this life is "normal" There is chaos and lots of driving to and from therapy, and appointments and meetings, but I am ready for that "normal" life again. I am ready to say goodbye to summer and get back to the routine of our lives. Aliza and Trevor are also eager to start school. Aliza will be in Second Grade and Trevor will be in Kindergarten. As much as they fight with each other, they are looking forward to being in the same school togther. And I am looking forward to one pick-up/drop off, and having one school to devote my volunteer time to. Ella will be in preschool two days per week. I am actually going to have real time to myself to work and finally get things done so that when the kids get home from school it will be less chaotic... ha, ha, we'll see!

Summer 2009

We started the summer without plans. We felt that we were going to have a stress-free, relatively unscheduled summer. No school, less therapy, no soccer or ballet. Relaxation was on the calendar. Tom is off from work for the summer (the benefits of teaching), the real estate market is slow (yuck!)... therefore we were going to enjoy a summer at home, together (all five of us!) with no where to go, nothing to do, no schedule, no anything!

Yikes... what were we thinking???? Two weeks in to the summer vacation, I decided that our plan was not the plan of rocket scientists. I really wanted to believe that we could just relax and enjoy... but day after day the kids woke up, had breakfast, watched a bit of TV, and fought with each other and us, then came lunch, playtime, dinner, bath and bed. It was a bit too monotonous, they missed seeing other people (even though we went to the park, for bike rides, swimming, etc.) Aliza especially showed us that she needed the routine and structure of school. She would wake up and say, what are we doing today? Why am I getting dressed, where are we going? This was constant for her. Without the routine of our regular schedule, she was lost. So I called the school and asked if it was too late to register for summer school? We had the option of a full day, 4 days per week, but I choose a half day. I did want her to be able to go with us to the pool and park and enjoy some of her summer activities. We also called the church and registered for Vacation Bible School. So after two weeks of nothing, we were all of a sudden scheduled and back to our routine... go, go, go This is what our kids are used to, being on the go. Because we are both home, we have really taken advantage of the opportunities for R & R. I have been able to sleep in, we are having family game night regularly and long family bike rides are the norm. Our typical schedule during the school year has us on the go in different directions, now we are on the go as a family.

Aliza attended summer school for two weeks. She was the only girl in a class with 6 boys. She missed her girl friends and realized that her siblings were not going to school also, but staying home having fun with mom and dad. She began to really have a fit about going to school and said to me that she didn't want to go to school because it is "my whole summer day" I conceded, and she has settled in to a summer without school or routine. She has gotten used to not being on the go, and we are all enjoying each others company the way summers should be.

Trevor's Determination

At four years old Trevor is a very determined little man. He has been struggling with some very common four year old issues... Am I cool? Am I a big kid? So we have had a lot of little challenges lately which are because he is trying to find his path...one of many times in his life I am sure!
The other week he had a very challenging couple of days. He was very defiant and refused to do almost anything we asked of him. One evening Tom went into his room to have a talk with him about making good choices and not lying... another issue that we have been dealing with. He had lied to his teachers about having an accident at school. He felt really bad about lying and was explaining to Tom that there were things that he was thinking about and couldn't get them out of his head (likely his conscience... thank goodness he has a conscience!) He continued to tell his Dad that there was a boy at school who told him the very first day of school that he is not cool! Tom told him that boy does not know what he is talking about, and it does not matter what that boy thinks, what matters most is what Trevor thinks about himself...Trevor thinks he IS COOL! This has been a really tough year at school for Trevor. There are some kids in his class that have some challenging behaviours and he has been caught in the middle. So now, that kid that told him he wasn't cool in the beginning of the year apparently thinks that he is cool now... and this really pleases Trevor. I know that we all strive for acceptance, I just wish that he was not so influenced by peers at such a young age...

Trevor's determination has also been very beneficial for him athletically. He is quite a competitive kid and pretty good at a lot of sports so far, which is much different than how he started as a toddler, completely uncoordinated and clumsy. The other day I asked him if he wanted me to take the training wheels off of his bike...? He said yes, yes, yes! So we took of the training wheels and went down to the street. He got on the bike, but didn't know how to start. I told him to petal. He froze. He could not figure out how to put his feet on the pedals. He kept putting both of his feet on the pedals at the same time... not a good plan. I helped him get started, but he kept stopping right away. He was completely balanced, but just could not coordinate both of his feet and the pedals at the same time. Finally, he said to me, "Mommy, I can't pedal and chew my gum at the same time." and then spit his gum out. I was hysterical. I thought about his dad who can't talk on his cell phone and walk at the same time. Is the ability to multitask (or not) really evident at such a young age? Once the gum was out, he was off. His head was down and the wheels were going. It is going to take some time to figure out how to put the brakes on and turn (both require the ability to make a plan), but for now he is incredibly proud of his accomplishment!
The following day, Trevor had an MRI to look at the soft tissue mass in his brain. We talked to him about the procedure the day before. He told me that if they were going to give him the medicine to make him sleep, he was not going! None of his friends have to get pictures of their brain, why should he. Finally, we talked about the Dr's. needing to make sure that he is healthy because he once fell on his head and got hurt. I reminded him that he has had this done before and mommy stays with him the entire time. When he realized that he had done this before, he said, "okay mom, I will go." I think he was afraid of medicine because he has recently had friends whose animals had to have medicine to go to sleep, permanently. I think he thought he was going to have the same treatment... once I told him we would come home once it was done, he was fine. The next question was, " what if the Dr. finds out that I am not healthy?" I told him that I am sure that he is healthy... he said "I think so too... I am really strong and I eat my vegetables. But mom, what do they do if I am not healthy?" To be honest, I don't know what happens if you are not healthy, but I can tell you that I will be with you the whole time! So we went in for the MRI with no problems. And this time he went to sleep with very little resistance. It guess as they get older and the more they understand about the process, the easier it gets... but I feel for those children who do this even more often than us...it is amazing how they adapt and the medical procedures become the norm... I pray that we never have to experience this as the norm for any of our children. The daily blood tests for 3 months when Trevor was 2 were hard enough! And today the Dr. called and said that Trevor's mass is stable, and there is no change! Yeah! Fantastic news! Trevor smiled and giggled and truly looked as though a weight had been taken off his shoulders! My little man, officially cool, a little bit uncoordinated still, but totally healthy!

Trevor's Talk

We decided that we needed to have a talk with Trevor and Ella, (but really Trevor) about his relationship with his sister Aliza and her disability. We talked about differences in people and why it is important in this life to acknowlege the differences of others. We took him to his favorite restaurant (Five Guys Burgers and Fries, while Aliza was at school) and asked him to identify the differences of those in our family. He never talked about Alizas differences. We asked him what he knew about Down syndrome? He said it is where mommy works at the Buddy Walks. Yes, that is correct, I have a business to raise awareness for Down syndrome and sell our products at Buddy Walks. We further clarified for Trevor that Down syndrome means that Aliza has something extra, that no one else in our family has... it means that she sometimes may have a hard time understanding things that he knows, or that she may not be able to do some things that he can do easily. She has to work so much harder to do the things that he (and Ella) are able to do. But Aliza also can do many things that he can not do... she is very flexible and can do a split easily, can swim very well, and loves to sing. All of this over a hot dog and french fries!

I believe Trevor really enjoyed the conversation and attention. He wanted to keep talking with us about Down syndrome and Alizas abilities. He did not shut down or refuse to talk with us. And two weeks later, believe it or not, I think he is still thinking about our conversation and about Down syndrome. He seems to be more patient with Aliza, more sensitive to her uniqueness and all of the kids seem to be getting along much better with each other. Down syndrome will always be a part of our lives, and it is not something to hide or shun. Communication makes it less taboo... If I can talk about Aliza and Down syndrome with a stranger in a store, I should talk with her siblings too!

Not so Good Friday

Aliza and her medical issues always seem to pop up on a holiday or the day of an event. So why would Good Friday be any different... The day was going too smooth. The kids and I were out for a walk, we ran into neighbors and they walked back with us to the house and played in the backyard. All was fine and the kids were playing really well. I noticed Aliza had gone inside. She likely had to go to the bathroom or wanted a snack, so I did not get alarmed. Within a few minutes she came outside and declared that she had taken her medicine! She was very confident about this and made the state almost as if to say, 'mommy, I told you so!" Earlier in the day when I had given to her the daily heart medicine that she takes, she told me that she was supposed to get it two times... not just one time, which I had given her. I explained to her that sometimes she gets her medicine in a small syringe which requires her to take it two times, but on this day I gave it to her in a bigger syringe, which is large enough to hold a full dose. She was insistant that I was wrong and obviously was having trouble understand my explaination. Needless to say, we moved on and went outside to play... fast forward to her coming outside to tell me she had just taken her medicine. I knew immediately what she had done and why she had done it. She felt that she did not get her full dose and was sure that she was going to take a full dose. I went inside with her and told her to show me how she took her medicine and how much she took. She told me she took 2. She was able to open the child-proof bottle and she poured the medicine into a teaspoon measuring spoon, not the dosing syringe. The measuring spoon holds 10mLs of medicine and she took 2 spoonfulls. She is prescribed to take 2mLs, 2 times per day. I calculated the amount of medicine left in the bottle, compared to the amount of medicine she should have left in the bottle since its last refill. There were about 21mLs unaccounted for. We called the Cardiologist on-call and went in to the ER. On the way to the ER she became tired and started falling asleep. I panicked as I was not sure if this was because of the medicine or because she often falls asleep in the car. Inside I was a wreck! As we pulled into the hospital parking lot, she said, "I am in big trouble aren't I?" At this point tears filled my eyes because all I could think of her making it through this, not how I was going to punish her. I realized how devasting this moment could be for our family. Once there her blood pressure had dropped significantly and they put her in a room and started her on IV's right away. She was quite a trooper through the whole event and once there we knew that she was going to be fine. Unfortunately it took a moment like this for us to realize that she could open a child proof bottle, but all those hours of Occupational Therapy have been beneficial... she proved her fine motor skills are pretty good! This definetely impacted her, she would not even consider taking medicine that was not given to her by an adult! There were no aftereffects of the overdose and we all went home within 6 hours of observation. Thankfully she took a medicine with relatively mild overdose effects! Lesson Learned: Don't underestimate Aliza and medicince kept on the top shelf of the fridge door and childproof top is not safe enough!

Our Spring Break Adventure

I originally created this blog as a journal for my kids of all the funny and challenging adventures of our journey together. Over the past few weeks we have been on quite a journey!

Trevor had a stomach virus, his first ever, which put him out of commission for a week. Thankfully, he is better and no one else got sick. I did not know that I would need to teach him how to throw up... he would get sick, and not let it out of his mouth until eventually it was coming out of his nose! Gross! Finally, he got the hang of it and this also seemed to cure him of his love for medicine. He now knows that being sick is not fun and he is not asking for medicine every time he sees a bottle of Tylenol.

In the meantime, the girls are healthy and well. Aliza is a doing great with her new heart medicine. We also have found a new tool to help her sleep and to soothe her. It is called a weighted blanket. Right now we only have a small lap pad, but our full blanket is on order. She really loves the feel of her blanket and is very calmed by the pressure and input she receives by having it on her. She is finally sleeping through the night and seems to be able to tolerate a full day of school much better. The combination of the new heart medicine and the weighted blanket have really given us all some relief. Even Alizas behavior has been better and the school is reporting that she is better able to focus and recall her academic skills. We are thrilled! She is making great progress thanks to great teachers and their willingness to think outside the box.

Tom had his spring break recently. We decided that we needed to take care of some of the drainage issues in our backyard and spring break was the perfect time to do it. So we planned out a new patio and Tom asked some guys from work for help, and the new patio was started...And as most things go with us, there were a few wrenches thrown into the plan. Okay, there were tons of wrench thrown into the plan and even a few pipes. Our backyard quickly became a mud pit, and looked as though we were planning for a pool, not a patio. Actually, a pool may be easier to create at this point. After a few days of muddy children and dogs coming into house and the prospects not getting any better due to all of the rain, we decided to run away from our problems and take a short vacation. We took the kids to Great Wolf Lodge in Poconos. This was the most impressive and full filled family adventure that totally took away our stress about our backyard. We could have cared less that buckets of rain were coming down, or that a contractor delivering crushed stone (which we did not need since we were not even close to having a base for our patio) knocked down the cable, telephone and power lines to our house because he did not put the bed of his truck down before pulling out of our driveway, or that we were in a traffic jam that took us 4.5 hours to go 13 miles to get get away from it all! This place was fantastic, and all of our frustration prior to our day of fun was well worth it. And in the grand scheme of things, we were together and healthy and well. We could have been in the accident that caused the road to close, or we could have been home when the power lines came down, or we could have been in many other devastating situations. Instead, we were inconvenienced for a bit, we cant go in our backyard, and we will have to spend a little bit more money than we had anticipated. Tom feels terrible about the situation in our backyard, but I give him credit for attempting to fix our backyard drainage problem and I am proud of him for being able to do the work that he did accomplish.

While at Great Wolf Lodge we learned a lot about our kids. Aliza is a dare-devil. She loved the big water slides which were like roller coasters. I was so thrilled to see her face and hear her screeches as we went so fast down the water slides. It was quite a climb to get to the top of the slides and she never complained about all the steps! Great physical therapy! Trevor was Mr. Independent. It was hard for him to stay with us because there was so much to do and see. He did not want to be held back by someone walking too slow and never wanted to take a rest. We had a hard time getting him to leave, even after a full day of water slides and swimming, he was still wanting to go, go, go! And then there was Ella. She was a bit too young for all the water slides, but we still sent her down one, by herself... that was the last time she was going down a slide. By the end of the day, she was comfortable in the wave pool and loved the fountains of water, and dancing in the fountains. She is definitely not a risk taker like her siblings, and is less of an adventurer than they are. She likes to sit back and watch others before getting involved. One of the best parts of parenting is watching their personalities develop and encouraging them to challenge themselves. I love when we have these special family times and unfortunately they are becoming fewer and fewer as our lives get busier. This overnight trip was a great opportunity to remind us of the great fun we have with our kids! We can't wait to go back!

The Rabbit

While thinking about the memories that Tom and I have had together in the almost 8 years that we have been married, I starting chuckling last night about our first date. I was living in an the in law suite attached to my parents house. I had my own kitchen and living room and front entrance. But I was uncomfortable with inviting my new date into the house. However, my parents were out of town and this was not our first meeting, just our first actual date. So, I welcomed him into my efficiency. I introduced him to my dog, my cats and my house. We sat down on couch and began small talk. The dog was very interested in my new date. She would not leave us alone. She was digging at the floor in front of my date, and very excited about the possibility that a bone, or something very exciting was under my new dates seat. I was a little embarrassed at her behavior, but got down on my hands and knees and reached under the couch to help the dog out. This got her very excited. The anticipation of her treat that was under the couch was too much for her and it was too far away for me to get. So my new date kindly offered to lift the couch so that I could get further under to get the dog her treat and hopefully she would leave us alone. After all, we were just getting to know each other and did not need the dog to be behaving hysterically while trying to talk about life. So, my new date lifted up the couch and I crawled under....What I saw was unreal. Under the couch in my living room, was a dead rabbit! I was speechless. There was no getting out of this one. The dog was now out of her mind with excitement, but still could not get to the "treat" My date had no idea what I had just seen, but I could not just leave it there. I scooted out from under the couch, calmly grabbed the dog and put her outside. I then told my date, that there was a dead rabbit under the couch... how it got there, I will never know. My date acted as if this was an everyday occurrence for him and asked where we kept our garbage bags, plain and simple. I exclaimed that he did not have to do this, that I would take care of it. He insisted, he moved the couch and collected the remains of the rabbit. It was not injured or old, and we will never know how it got under my couch. We had a good amount of land and often had rabbits in the yard. I suppose that one of them had gotten chased into the house by one of the cats through the cat door or porch and ran and hid and was too afraid to come out... and simply died. I was so embarrassed, the thought my new date finding a dead animal in my living room and still going on a date with me, and then eventually marrying me still makes me giggle. Can you imagine what he told his friends the next day about his date??? This is the story of our relationship! We have so many unique things that happen to us on our journey together, and through it all, we giggle, cry and get angry but in the end, we continue our date!

Toms 25 Things

Tom was asked on Facebook to make a list of 25 things that he would like others to know about him. I hope he does not mind me posting his list on here, but I feel it is an important part of who we are as a couple and family and something that I would like to add to our family journal. I love you honey!

1. I love cheese.
2. I was voted "most likely to be a good parent" in high school...those fools.
3. My children are my heroes because well...see #2. It is nearly impossible.
4. My oldest daughter, Aliza, has Down syndrome. She has taught me so much about life that I didn't know I didn't know.
5. I have worked for two doughnut companies. Dunkin Donuts in high school and Krispy Kreme out of college...I can hardly say it myself with a straight face. I finally quit the day after narrowly missing the bridge abutment on Route 1 South when I fell asleep driving the delivery truck.
6. My favorite vacation was to the Cayman Islands. Watching the sun set while laying in the hammock with Kristin is a memory that is burned into my brain.
7. As president of my fraternity, one of my proudest moments was when we won Fraternity of the Year.8. I desperately want to be real friends with Joey, Rachel, Ross, Chandler, Monica, and Phoebe.
9. I was a sorority sweetheart for Alpha Sigma Alpha for 3 years...good times...
10. Ella is 2 and is a ray of sunshine. She's always up for a big hug and kiss. She loves to giggle but doesn't take crap from anyone.
11. I have never had chicken pox, broken a bone, was born without wisdom teeth, have no cavities, and short of getting a few stitches have spent no time in the hospital on myself. What I am trying to tell you is that I am genetically superior...(insert evil laugh here.)
12. I am one who believes that the grass is always greener on the other side. While it may not be true, I always like to see what kind of lawn mowers they are using.
13. I have a Masters degree in Education.
14. I'd like to hike the Appalachian trail but I hate camping.
15. I moved to Delaware for a girl. (not his wife!)
16. The root beer snarf is perhaps the most painful experience one could have outside of child birth.
17. I nearly passed out during Kristin's epiderral with our first child. Our other two children were delivered by midwives without pain medication. What a cool experience.
18. My son, Trevor, was diagnosed with a brain tumor two years ago. Total fluke that we even found it. We don't know what it means or what it's going to do, but in the meantime that boy never ceases to amaze me. He is an old soul and at 4 years old is the smartest kid I know.
19. I am too self consumed. I want to work harder at reaching out a helping hand to my neighbors and friends. No matter what you might be going through there is always someone who has it worse than you.
20. I have been white water rafting down the Gauley River twice. What a rush! One of our tour guides was named was Ric O'Shea (say it to yourself) pretty fitting, huh?
21. Most of my good friends have been so for almost twenty years. We don't speak to or see eachother as much as I would like but know that I think of you often and cherish the times we've spent together.
22. We have a boxer named Rufus Xavier Sasparilla but we call him Chase.
23. My sister lives in Philadelphia now and I really enjoy her friendship. She is an awesome force in the lives of my children and I am forever thankful for her.
24. One day we want to rent an RV and spend an entire summer driving across the country with the kids.
25. Kristin is the rock of our family. Everything I am and all that I have is because of her. My life would be broken without her.

Trevor's Thoughts on God

Trevor often asks us about God and who is God and where does he live. These are all questions that we are comfortable with answering and we really enjoy his inquisitiveness. So, while on our way to school the other day, Trevor asked a question, "Mom, is there more than one God?"

I take a deep breath and think of my response. First, I am not at all sure why he is asking this question. Many times I get anxious about my answers to his questions, but later realize that he was looking for a very simple, to the point answer. So I answer him, "Mommy and Daddy believe that there is only one God. But, other people believe in many different Gods." So I ask him, "What do you believe?" His response, " I think there are many different Gods, one for each planet!" Then he adds, "But neither of us is wrong because we will never really know will we!"

This was a very simple conversation and he came to his own conclusion and I left it at that. I am proud of him for many things, but I am most proud of him for his ability to think for himself and come to conclusions that are so profound. I hope this quality, while frustrating at times (because he argues every point and always wants to be right!), helps him to continue down whatever path he decides to take, not the path that he believes others want him to take.

Judging a book by it's cover!

I have a confession to make... I have judged a book by it's cover! I have never been one to bite me tongue or to hide my feelings, but this is different! I have scoured the internet, read books, talked to other parents of kids with Down syndrome, gone to seminars about Down syndrome and parent a child with Down syndrome. I am an "expert" on Down syndrome... Right?!?

Wrong! So totally wrong that I am speechless and embarrassed at myself! For a few years I have become friends with another mom of a seven year old child. We have had playdates and we have met for tea. We have gone to each others children's birthday parties and have met each others spouses. We are not great friends, but we are friendly. And we have something in common, we both have a child with Down syndrome...

This evening while at the hospital for Aliza's therapy I had a few minutes to talk to my friend. We caught up on life, school, the kids, etc. It has been a few months since we last saw each other. We griped about how school is going, but also talked about the accomplishments the kids have made this year in school. We talked about Down syndrome and the challenges both medically and educationally for kids with Down syndrome. This was not unlike many of our discussions. I have always been fond of this friend and felt this connection with her since we first met.

We talked about "labels" and how people label children based on their appearances and diagnosis, but did it really matter what their diagnosis is? Do we need to wear our labels on our sleeve? This is where we had a difference of opinion. Yes, I want Aliza to be treated as anyone else would be treated, no exceptions positive or negative. She has to follow the same rules as the rest of the children at school, in public and at home. However, I believe that children with Down syndrome learn differently than other children, including other children with disabilities. There are more commonalities in ways children with Down syndrome learn than children with other types of learning disabilities. For example, Aliza can not be taught by someone standing in front of her using a board, she needs to have hands on activities and is not an auditory learner. This is common for most children with Down syndrome. So while I do not want Aliza to wear a label on her forehead that says "I have Down syndrome", I would appreciate it if those that were educating her took into consideration her diagnosis of Down syndrome when presenting her with material, or challenging her so as to prevent her from getting confused and defensive. This has been my goal for awhile now, to make sure that everyone involved in educating my child has knowledge of her, but also of issues related to Down syndrome.

So where does my friends opinion lie with this issue? Well, she feels it does not matter what a child's label is, we need to address each childs needs individually. She tells me that used to see a physician at the hospital who would often refer to her child has having Down syndrome and she would have to correct her, whoa, stop the presses, thats right. Her child does not have Down syndrome! For years I have discussed our childrens' disabilities with this person, and never once had her childs diagnosis ever come up. Saying this now, I feel so selfish, however I know that we often discussed her daughters educational challenges and medical needs. I never asked her about the diagnosis of Down syndrome because to me it seemed so obvious. I know that I almost passed out in shock! I said, "you mean your child does not have Down syndrome?" No, but lots of people think that and even people at the school think that, but Down syndrome is not the diagnosis. As a matter of fact, they do not have a diagnosis. I apologized and apologized and apologized. We laughed about the mistake, and she had no idea that I did not know that her child did or did not have Down syndrome. I told her that I have had an eye opening experience about my beliefs about Down syndrome. Although I have always believed that people with Down syndrome look more like their family members than others with Down syndrome, for some reason, I believed this child had Down syndrome.

I left the therapy session humbled by this information and wondering how she must feel without a diagnosis for her childs delays. She said that is hard for them because they do not know why or what is causing the delays. We fight our labels when we are given them and want them when we don't have them. Label or not, I hope to have learned my lesson to never judge a book by it's cover!

Holidays!

The Christmas Holidays are a magical time of year. When there are children involved the meaning of magical changes. I am reminded of how grateful I am to have children and to be able to see the Holidays through the eyes of a child. Each child experiences the wonders of the holidays differently, but words can not express the excitement and joy in their faces and bodies as they see the holiday lights, prepare for the visits from family and friends, and eventually the arrival of Santa.

We had a terrific Christmas this year. It was such a game for us to try to keep the magic of Christmas alive for Trevor. He is so intuitive and we knew that any little slip up and the gig would be up. We even hid the Christmas wrapping paper because he would question why Santa wrapped his presents with our wrapping paper. We hid presents at neighbors homes, in the attic, in the basement, in the garage...

Ella was a bit overwhelmed with all the Christmas fuss. She did decide however that she likes wearing dresses and stockings and dressing fancy! I have to admit that a small part of me enjoys helping her to be "fancy".

For about one week before Christmas Aliza would get dressed in her pajamas before dinner, so that she could go to bed because Santa was coming. No matter how many times we told her that Santa was not coming for a few nights, she insisted that she be ready! Ever night she would wake in the middle of the night and coming running into our room, "Mommy, Daddy, Santa is here, I heard Santa's reindeer!" We would walk her back to her room, convincing her that it was not Santa, only to have her wake up again and again and again! Finally, we started letting her climb into our bed so that we could get a decent nights sleep. She would talk and talk and tell us stories about her dreams of Santa coming to visit her. As excited as we were for her, we also needed to sleep! We would let her tell us of her dreams of Santa for a few minutes, then remind her that we all needed to go to sleep. This was the first time that Aliza has had a fixation on something and the ability to plan for an upcoming event. She knew that Santa was coming!

Christmas morning was somewhat anticlamatic for all! The look in their eyes when they came down the steps Christmas morning was priceless, but the anticipation for the amazing event was over and that was kind of sad. Well, for everyone except Aliza, who everyday since Christmas is still asking us if Santa is coming that night, and continues to wake up each night telling anyone who will listen at 2am that "Santa is here".