Great Day!

WOW, usually a busy day makes me crazy, but today was different. I don't know if it's because I was off yesterday from school and I got alot done and didn't have to rush around to get things done today, but I had a great day. Mike had to work so he was up and gone by 4:30am. I found Spencer asleep in the kitchen floor when Mike got up so he put him in bed with me. We slept until 7:30am and then watch Disney, ate breakfast and spent the morning washing clothes, picking up and general things. Along with those I decorated the cake for Archie and Ryan's birthday party. I wanted it to be perfect for those 2 special little guys whose families are like my own and I consider them to be like my family! Things went great with the cake and it turned out beautiful and everyone loved it! The party was so much fun and Spencer enjoyed it....I was scared he would get over stimulated, but he didn't. In fact he found a new friend and kinda followed her around, Archie's Nana. I think she reminds Spencer of his Mamaw who he misses alot. It's good to connect with people who remind you of loved ones who live far. The party was great and Spencer joined in just like circle time at school when the books were read. We left there and went to my friend's house for game night. It was a blast and we laughed alot. What a fun day and what great friends we have here in Greenville, SC. Thanks to all of you for letting us enjoy you, your families and your friends!

Structure

OK, I'm the first to admit that I like structure in my life.....maybe I have adult ADHD?! It really isn't funny, but today was truly a messed up day.....got up @ 5am, got ready and Spencer was up by 6am. Got him on the bus @ 7:20 and I headed to Dorman. Getting into the car I heard my phone in the house ringing and I didn't answer it, thought who the heck is calling. Ended up being one of my assistance to tell me not to go to school, that we were canceled. On my way to Dorman I listen to WORD radio and just past Reidville Rd they said Dorman High was closed today because of a chemical leak at a nearby plant. I called one of the coaches I knew and he said yes we were closed and not to go to the school because they wouldn't let you on campus. By this time I'm @ 290/221 so I U turn back up 290 to the house really upset. I admit I love the thought of having the day off, but after I had got up, got ready and almost made it to school found out school was canceled and headed back up the road, I got this weird feeling like this isn't right, I'm suppose to be at school. It was really hard for my mind to make the switch, to change things that I had already started and I have to say I got scared, like maybe I hadn't heard right and I should be at school. It's strange that sometimes the mind can be so powerful that you have to really stop and think about things and make sure you go over and over what is happening and convince yourself it is the right thing to do and you did hear right.

Not sure any of this makes sense, but structure I need and not just me, but Spencer likes structure also. Not just him but my students, who I worried about, need structure and alot of their peers need structure and other teachers need structure and some of my friends need structure. I think structure makes us secure in our daily living and that is why we like it and hate to have things changed. So if I'm having a bad day, it is usually that something just isn't quite right with my routine and the same holds true for Spencer. Some structure is a good thing as long as it doesn't dominate your life!

Simple Life

I'm not sure why the older I get, the harder it seems to be simple. Something always seems to be throwing me into a turmoil where I lose my cool either at work or here at home. But when I'm with Spencer and we're home in the evening sitting on the couch watching Spongebob after supper and his bath, me massaging his hands and feet and just breathing him in, life seems so simple, so relaxed that I wish we could stay like this all day and night. Just enjoying him, not really pushing him to do something he doesn't want to, not trying to "fix" him, or, make him say sounds he can't or make him play something he doesn't want to. I enjoy this time, me and him. I get "warm fuzzies" deep down in my tummy because I know my little man will always help Mommie enjoy the simple life!

Forgot to add......

Pregnancy and Infant Loss Day

Today is the day that is hard! It is a day of remembering and honoring our little ones that have passed. So tonight @ 7pm I will light a candle in memory of our sweet little girl, Madelyn Jane. She taught me so much in a short time and prepared me for Spencer's Down Syndrome. Thank you sweet baby girl, Rest In Peace!

Healthy Eating

OK, since losing 140 lbs, I really try to eat healthy, thus pass it on to Spencer, let's face it Mike is a grown boy and does what he wants! But Spencer is a little chunky and has the potential of becoming overweight! I don't want that mainly because of his heart and health issues. I want him to love active time, running, playing, swimming....etc. He loves activities, but let's face it, he's a kid when it comes to eating. I remember saying I'd never take my kid through McD's drive thru, well guess what, I do.....every time we pass by a McD, Jack in the Box, Chick Fil A, or any other place Spencer has had chicken nuggets before, he breaks his neck watching it pass by and then whines this little whimper to let me know he's not happy. Well, today in my persuit of healthy eating, I packed Spencer some carrot sticks with ranch dressing to dip them in. The note from school read "Spencer is quite a smart little boy. Today at lunch he put his carrot sticks in his milk carton to make us think he had ate them all. He sure keeps us on our toes!" What a smart fellow, hide them and they will think I've ate them! He is to cute and amazing! Just like any little boy, hates his vegetables! Don't worry son, you'll grow to love them!

"He's the child............."

WOW, just finished at lunch reading Roadmap to Holland. What a great way she has shared so many of the same feelings I had. This read was great therapy for me at a time when I needed some therapy! I remember that day when the genetic counselor confirmed that Spencer has Down Syndrome. I couldn't hardly breathe, it hurt so bad. Mostly it hurt because I was afraid he was going to die, just like Madelyn. Now 7 years and some odd months later, can't remember it. Not that I want that feeling back, but what it actually felt like. That hurt, not knowing, not understanding and not knowing what I was suppose to do! Now, what to do just happens. Just be Mommie and everything else will fall into place. I remember his teacher at the Meyer Center, Ms. "Didi" told me "don't worry, you do the Mommie things and let us teachers do the rest." She was such a great teacher for Spencer and me.

Today when I finished the book, the last 2 sentences said it all "He's the child I wanted, that I did not know I wanted. He is my son."

Relaxing Sunday Evening

Today has been the best day in a while! Spencer and I actually went to early service this morning. We didn't stay for Sunday School as Spencer doesn't really fit in the 1st grade room. He's not a sit down, color, cut, paste or listen to a story kid. During worship though, he was awesome! He sat and didn't make to many noises. He loves the music and today they had the handbells that he really loves. Elmo went also and sat in a chair beside of Spencer. I could sit and watch him for hours at times when he is interacting with his stuffed toys. They sent home play and speech targets and really he is doing those already. Maybe not in a real structured setting but he knows these things like Elmo, bowl, spoon, cup, drink, eat, blanket, sleep.......and he does 2-step directions good. Sometimes it takes him a while to focus on what I am acting, he's usually "into" a movie or computer game. When I'm taking to him and he's ignoring me, I ask Mike do you think he can't hear me or is he ignoring me? Neither of us can answer that, but I know once I get his attention he goes and does what I ask.

Today, a day that was relaxing. Watching Spencer play with Bubbles, at church, eating and interacting with his toys. I love days like this!

Projects

OK, I admit, it was a long, hard week. Today when I woke by the noise of Spencer on the laptop watching the Wiggles, I thought "oh no", already! So I got up and kissed him good morning, with little reaction from him. We went to the potty, I fixed his milk and then laid back down on the couch. That didn't last long as my mind raced with all the things that need done. The problem with this is I can't get one job finished before I begin another one. I have so many things that rush around in my head that I can't get organized. So today, I just did NOTHING!! Yes you read right, NOTHING! Oh I picked up a little, Spencer & I worked on his speech goals and play targets for the week with Elmo, filled the bird feeders, trimmed some bushes that were growing over our fence, killed some fireant mounds, tried to help Mike with the pool, washed a couple loads of clothes at our neighbor's house since ours is on the outs, cooked dinner, swept the kitchen, loaded the dishwaser, ok, ok, I did do something but much less than I normally do! But you know, it felt good to just kinda wonder around and leisurely do what I felt only needed done. I don't do this often, but once in a great while it's nice!

The projects that are still not completed? Well they will still be waiting on me when I get to them and hopefully I can organize in my mind my next day off! Happy Saturday to you!

Greenville Children's Hospital Radiothon

I listen to WORD Radio on the way to school in the morning and today they were having a Radiothon for Greenville Memorial Hospital's Children Hospital. When I was listening to the couple of stories from parents who had experienced the Children's Hospital, I began thinking back to when we spent time there. In 1999 when Madelyn was born we spent 5 days in the old NICU. Now they have a great new NICU that we haven't seen, but hear it's great. When Spencer was born we spent 3 weeks in NICU, still the old one. Shortly after we came home, Spencer spiked a fever of 104 under the arm. I was such a nervous wreck I called 911 because I thought it was his heart. They refused to take us to GHS Children's Hospital, we live on the line of Spartanburg/Greenville, but are actually Spartanburg County. I asked the EMTs to leave so I could drive my son to the hospital that knows how to care for him. They did and we drove off to the hospital. We ended up having a UTI, he wasn't circumcised yet and this led to the UTI. We spent Labor weekend 2001 in the Children's Hospital. Since then we've been back for outpatient procedures.

What a great place, great doctors, great nurses, great staff and great support. They were so caring and understanding! Mike and I have the utmost respect for the Children's Hospital and GHS in general. Thank you for taking care of our little guy and supporting us and helping us in our stays at the hospital. We are lucky to have such a great resource here in the Upstate.

Reaction?!

I often think back this time of year to a time that seems oh so long ago....the Fall of 1999 when Mike and I were expecting our first child. A little girl whom we named Madelyn Jane. At the end of June 1999, I went in for the "normal" 16-18 week ultrasound. Mike had just started a new job that was in Charlotte, but opening an office in Greenville by September. I was packed and ready to leave for WV with Samantha and our dog at that time, Willow. As I laid on the table of the ob/gyn and watched as the tech did her thing, I noticed it was taking a long time. I had to have ultrasounds before because of some abnormal bleeding and they didn't take this long. I told her "come on now, I'm on my way out of here to WV to visit...." She said I need to get the dr to let him look at a couple things. Well that automatically sent red flags up for me everywhere. When I questioned this, she said she thought she seem some signs of a possible chromosomal abnormalities. I said ok like what, I'm a special needs teacher and I want to know now. She made me wait for the dr and he said that they seen what looked like Madelyn had no diaphram and the thickening at the back of the neck and "white spots" on the stomach. I lost it, tried to get in touch with Mike. He was doing sales that day in Greenville. It seemed like forever I sat there by myself, no one to call, no one to talk to, nurses looking at me like I was from Mars, just a real "I'm all by myself feeling". Mike showed up finally and the dr took us in his office and offered up his thoughts abd suggestions. One of the things he told us was abortion and we could try again later. Now I look back and think "oh my God", is this what they tell all parents if their babies aren't perfect at that ultrasound. No wonder the % is so high for abortions with a prenatal dx of Down Syndrome. I thought Mike was going to punch the man's lights out. He gave him a few choice words and we left. They sent me to Maternal/Fetal for further ultrasounds. We went the next day, had a level 2 and they did see some markers of some sort of chomosomal abnormality. We seen the dr and he suggest I go to WV and have a good time and relax. We decided to do the amnio. DUMB MOVE! It hurt like hell!!! The only reason I wanted it done was to know exactly what sort of diability we would be dealing with, that's the special eduator coming out again! We did the amnio and when the results came back we went in to meet with a genetic counselor. I'll never forget her, she reminded me of Princess Di....very attractive and poised. She sat across from us and said, "the baby is a girl and she has Down Syndrome". Mike and I looked at each other and then back at her and I said "what type of Down Syndrome"? She got a funny look on her face and said "Trisomy 21". At that point we raised our hands in a high 5, started hugging, crying, laughing and thanking her for the news. She told us that never before in her career had she ever had a reaction quite like that one! I proceeded to tell her that we had talked and working with special needs children that have Down Syndrome, Trisomy 21 would be my disability of choice if ever I could choose. She laughed and said you guys are quite a pair and this little lady will have a great life! Unfortunately, Madelyn's life was short lived due to her unfixable heart defect. She survived 5 days in NICU. God however knew that our family could handle this dx so we got another chance 2 years later with Spencer. I remember my Dad saying the night the counselor told us Spencer had Down Syndrome, "God knows that this family is good with kids that have Down Syndrome. We have Tracy, we had Madelyn for a short time and now we get to have Spencer"! What a blessing for a family to be able to have 3 children with Down Syndrome, What a BLESSING and JOY!!

Enough!

OK, the last posts all seem like I'm bitchin' and complaining. I want to post something positive today. YES, my child has a disability! Yes that is a positive thing! Where would I be today if I had not experienced the birth of not 1 but 2 children with T21 Down Syndrome. I definitely would not be as compassionate as I am about my career as a special educator, my students and how others treat them. I definitely would not have the attitude I have, be it good or bad, depending on the mood I'm in. I definitely would not appreciate the little things in life that so many take for granted. Little things like that sound that you know by golly is a word. Yesterday evening at dinner we were watching Sponge Bob, I know bad idea, but hey it distracts from the eating of foods normally Spencer would refuse. The song they sing comes on and its has in it "wooooooooo" lives in a ....... I be gosh dang if Spencer didn't do that part, the "wooooooooo"! I 'bout came unglued laughing, crying, screaming at Mike to listen and guess what. Spencer wouldn't do it again if his life depended on it, but by golly I heard it!!! Go Spence, I knew you could. He is so stubborn sometimes I could eat him up! Sometimes he does things I know to see my reaction. Push my button until I explode and I see it in him saying, oh boy there she goes! Just the simple life, that's all Spencer wants and I guess in a way he gets it. Don't know if you've ever read it, but it is well worth the time. The title "If People with Down Syndrome Ruled the World" http://www.nads.org/pages_new/news/ruletheworld.html Take time and check it out.....how great the world would be. That's what I think about when Spencer is being difficult, how simple my world would be if he ran it!!

Monday, Monday...by the Momas & Papas

That is definitely what it has been, not quite as bad as Friday, but still Monday! We had a great weekend and Spencer enjoyed our fire in the pit on Saturday night. It was so much fun to sit and watch the stars, listen to the fire crackling and Spencer and Bubbles(the dog) side by side. It does make me homesick though. In WV we do this on a regular basis, have a fire outside, roasting weiners, making s'mores and just sittin' around talkin'. It's the simple life I miss by not living in WV. You see having a child with Down Syndrome is not new to my family. My brother has a daughter with Down Syndrome, Tracy, soon to be 30 years old on Jan 2, 2009! They are having her a BIG PARTY! She deserves it! I get homesick for family! I need family support! I need a simple life so my child can grow knowing his family loves and cares for him. It's hard for him to connect with them across the miles when he only sees them one every 3-4 months. We have lots of friends and people we love, but it's just not family. I know I can call my friends at any time and say "hey I need you". But it's not like calling Mom or Steve and saying "Hey I need you". I miss the fact that no matter how you feel, family is there and of course they always give their opinion on how you they which is hard to take sometimes!

It is good to know though, that I can always go back and they will welcome me with open arms. Someday maybe, but for now, Mike, Spencer and I make our home here in SC. It is a nice and good place, but it's not "home".

Failure!

What can I say....I could give all kinds of excuses for not blogging Fri and Sat, but that's all they are. Everytime I thought about doing it something else came to mind that needed to be done. So here I sit feeling like a failure and that's been alot lately!! I feel I've failed my son by not doing enough to help him in his achievements. Maybe to many movies, to much time on the computer by him and me, to many video games and not enough quality time spend with him and playing with him to help him get where I feel he needs to be. Then I turn a complete 360 and say you know what, I can only do so much! I'm a working mom, trying to make sure Spencer has everything he needs to reach his highest potential and that's all I can do. Guess you could say I'm having a "hormonal" moment, which those are alot these days. Tears at every little thing, every little thought and everytime I read about Down Syndrome I feel I'm on overload. WOW you'd thought at this time in my life I would have come to grips with things, but you know I don't think we as parents of children with a disability every come fully to grips with that fact. We say we do, but we all have those moments where it hits hard! My child will probably never marry, my child since he is the only child, will never be a parent, therefore I'll never be a grandparent.....This hits hard. I don't blame Spencer, it's not his fault by no means, but these thoughts often consume me and I have to step back and look at things again. I do thank GOD for my child with special needs and that we never will have to deal with the peer pressures so called typical children have to go through, I'll never have to deal with drugs and alcohol problems, never have any severe behavior issues in school, he'll always love life to the fullest I'll always be able to play "Santa" at Christmas, Easter Bunny @ Easter and I'll always be able to watch cartoons with my child.....these things are great! I do consider myself very fortunate to have a child with Down Syndrome, because out of all the disabilities, Down Syndrome to me is the one I would have chosen if given a choice.

Well enough of my venting and I hope to be able to blog everyday even though I've missed 2 days, I think I more than made up for it here!

31 for 21

OK, I missed yesterday blogging 'cause I just found out that this is the month for the blog. 31 days of blogging to raise awarness of Trisomy 21 Down Syndrome.

I guess I just write what I want.....to start Down Syndrome has been a part of my life for 30 years!! Yes and Spencer is only 7. My brother, Steve, has a daughter who was born January 2, 1979 with Down Syndrome. I was 19 at that time and in college. I remember seeing her for the 1st time and thinking she looks alot like I did when I was a baby, chubby with a round head. I remember her ears being sunk in her head because of swelling, but not realizing it at the time. It was a small town hopital in WV. They had a young lady peditrician that came around and told my sister in law, Doris, that they were sending Tracy to Charleston WV to have some tests run. No one really ever said anything else. Years later after Spencer was born, Doris told me about the night they arrived at the hospital in Charleston and a nurse from the NICU told her that Tracy was a Mongoloid. She said is was if someone had taken a hot poker and stuck it in her stomach and began turning it back and forth! What a terrible thing to say, but of course times have changed, well at least we like to think they have! I remember her bringing Tracy to Beckley WV for therapies with an Early Interventionist and me going with her....I was amazed at how flexible Tracy was in her joints and how she could spread her legs and do a "chinese split". I never once realized that this was bad for her hip joints. I remember her going to school at a special school and loving it, her friends and teachers. I remember her older brother and older sister getting into physical fights with other kids. They made fun of Tracy alot and Jason and Tammie were very protective! I remember going places with Tracy and getting odd looks from others and getting very defensive, just like I do now with Spencer. Why can't people just look and give you a nice smile, one that lets you know they are seeing something different, but no, there are always those that look like you've falling out of sky from somewhere!!

I can see how things have changed from the time Steve and Doris had Tracy to now with Spencer. People have become more aware, but we have so far to go with awareness! My goal with awareness is for all people to accept people with Down Syndrome for who they are, not what they look like and what they can or can't do. Tracy and Spencer both are special people who love life and enjoy laughing, which is something we all should do more of!!!

Buddy Walk 2008

What a great cause....walking for awarness of Down Syndrome! How many people I know that are so ignorant to what Down Syndrome is! They should have all been there at the walk to see that individuals with Down Syndrome are no different than they are, but yet of course they are different. They are happy, love to dance, sing, laugh, run, walk, play etc.....things that we "typical" people don't do enough of. This is one day I love, Buddy Walk, where I see all different people, some with Down Syndrome, others without it, but they all blend together. What a wonderful day and a huge THANK YOU to Anne and Marcy for organizing it and to the sponsors for sponsoring it and to all of those that attended in honor of someone or just because they wanted to. WHAT A GREAT DAY!

Photo and video editing at www.OneTrueMedia.com

Sam's 15th Birthday

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Sam's 15th birthday was a bowling party. It was fun and Spencer bowled for the first time. He did really well since the bumpers were up. We all did. Samantha wanted a WV football field for her cake. It was good and she enjoyed it! Happy Birthday little girl, you are growing way to fast! Stay Strong to your beliefs!

Mike's B'day

Spencer loves celebrating birthdays! Not sure if he knows this is Dad's b'day or not, but he has fun! He loves giving him cards and helping him blow out his candle. I made him a homemade red velvet cake with cooked icing. It was really good, so Mike and Spencer say. This has become a tradition, taking Spencer's pic with his Daddy on Daddy's b'day. I have one for every year since 2001! Happy Birthday Mike, Spencer and I love you with all of our hearts!

Camp Stargazer video made smaller

Hopefully this made it smaller so all the pic shows up on the screen! Enjoy

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Camp Stargazers

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Wow What a weekend retreat! This camp is provided by Camp Greenville YMCA and Greenville County Parks and Recreational District. What a hugh thank you to them for providing this opportunity to families who have children with Down Syndrome. It's a family camp, everyone in the family comes together to renew old friendships, make new ones and support! This is one place you don't have to make an excuse as to why you child does this or does that. The other family have been there, done that and have the t-shirt!!!

The activities are great. We did canoeing, hiked to Rainbow Falls, did a Parent Chat, Zip Lined, did campfire, marshmellows, singing, square dancing, and lastly a reflection service at Pretty Place Chapel. A great renewal weekend with lots of friends who because of Down Syndrome, many have become our closest friends. Thanks to the great volunteers @ the YMCA camp and also Camp Spearhead who give up their weekends to spend time with us and our children! They are outstanding young people!

Mike & I did the 2 mile hike down the mountain to Rainbow Falls. Spencer's counselor, Josh took Spencer to allow us to do this. Thanks Josh, you are a great person! This hike is one I would never had imagine me doing a year ago. WOW what an accomplishment for me personally! The hike was literally down across rock faces and curving along to reach this falls. Once there, tears filled my eyes at the beauty and wonder why some don't believe in God. When you see this there is no way that this beauty could be duplicated! Thank you God for a great weekend!