summer 2009

It is amazing how different this summer has been compared to previous years. I took the girls to the Great Escape last weekend and it was the first in almost 12 years that I didn't have a stroller with me. Jay and I have been trying to each spend more one on one time with each of the kids. It has been working out really nice. Jay & Colin have always spent a lot of time together because of BMX and hanging out together working on bikes in the garage. I know it is important for Jay & Colin to spend a lot time together but it is just as important to spend time with the girls. It is so nice to go out with just one of them, you really get to enjoy the time with them.
Colin starts middle school in less than 3 weeks. Braelyn is starting kindergarten, i'll have no one home with me. I kind of feel like I'm starting a new chapter...we'll see what is yet to come.

wow!

I guess I haven't been too on top of my blog. It's the last week of school and although I'm excited to have the kids home for the summer I find myself feeling a little bit sad. Another school year has flown by and my kids are not the same kids they were when they went into the school year. Yes, most of the changes are for the good. They have learned a lot of new things, they grown, they can do more and more fun things all the time. But, it is a little sad to know you'll never get those kids back, everything is always moving forward and too often it is moving a little too fast for me. Nellie is talking more and more all the time and Colin seems to be talking less ( at least to me ) I'll be leaving the house in about an hour to take Braelyn to nursery school for the last time. (yah, I've been teary all morning). All I can do is try to give my kids a fantastic summer and keep making great memories.

Speaking of memories...we went to the Kingston regional this weekend for Colin's race. Colin has been racing for 5 years and we have had so many great times. This weekend we had about 8 families all camping together at the track. These people have become such good friends. Anyway, it rained and I mean rained all evening and all night. We were soaked, I had 4 bags full of wet dirty clothes, just nasty. in the middle of this storm a group of them decide to make a huge slip & slide. They take a big piece of plastic, put it on a hill and pour several large bottles of bubbles down it. The kids were soaked, covered in bubbles & mud it was disgusting but they had a ball. These kids get to do these things together almost every weekend. So, even though it is a ton of work traveling every week, I try my best to suck it up and just enjoy it.

I am a nervous wreck about colin going to middle school. These next couple years can really make a difference. These kids are really getting older, I had to sit Colin down and talk to him about drugs. I really hate the fact that he has to know these things, but I want him prepared. I want him to have correct information. all of a sudden I'm looking at his friends a Little differently, I'm listening to their conversations a little more closely. Oh-my, the girls are so much older than the boys!!! Girls stay away! ha,ha.

Braelyn will be starting kindergarten in the fall and although this little girl can give me a really hard time I will miss the hell out of her. I am definitely at the point in my life that I do not want anymore children, but I think times like this would be easier if I had a baby at home. I know I'm get through it. I am always surprised how many things I have forgotten about my kids that I thought I would always remember. One memory I will never forget, it clear in my mind is the memory of that school bus turning the corner to pick Colin up for the first time. I was heartbroken.

although I wish they could stay small, there are a lot of great things that come from them getting bigger. When we go to a party or picnic, I can actually sit and talk with adults and the kids go off and play with the other kids. They can feed themselves so I get to eat my meal while it is still hot. They can all buckle themselves into the car, we actually pull out of our driveway minutes after getting to the car. I really enjoy the music they listen to now and the TV shows/movies are much better too. I don't have to carry a big bag full of drinks, clothes, diapers etc...Colin can even mow the lawn! We can do a lot of fun things as a family too. The kids can pull their own sleds up the hill while sleigh riding, they can go on rides that I like at the amusement park, snow tubing, roller skating, swimming so many fun things. OK, thanks, I needed to focus on the positive, I'm feeling better now. :)

My hope for all kids this summer is to have great weather and lots of fun times! Sleep in when you need to, play into the night, laugh, play games with water & balls. Eat lots of ice cream, just play, play, play and enjoy being kids!!!

now, I have to bring my little baby to nursery school for the last time....

The craziness has begun....

It always amazes me how crazy this time of year is when you have children. The last 2 months of school are CRAZY! It makes me feel overwhelmed just thinking about everything coming up. Mothers/fathers day at pre-school, end of the year parties, 5th grade moving up, 5th grade picnic, 5th grade trip to Boston, field day, teacher recognition luncheon, girl Scout Bridging, 5K Rotary run and the list goes on and on. I remember my Mom going to field day when I was little but that is about all I remember. Was it this crazy for parents when I was little? I really don't think so. I think parent involvement is much different today then when I was a kid. I love being so involved with my kids lives, but I wonder if it's too much.

We had open house at Tri-city this past weekend. BMX had officially started in NY. It was a great day and a great turn out. We had so many new riders and I was so proud to see all the seasoned riders stepping up and mentoring the new kids. I was watching the older riders (college students) and it was so nice to see how willing they were to help out. They are great role models for kids that are Colin's age. We are very blessed to have met such a wonderful community of people. Jay was having so much fun working all the kids bicycles, everyone did a great job and open house was a huge success! So now it's good by life, hello BMX. :)
Jay & Colin went out to race in Kingston on Sunday, Colin had a great day. He is so happy to get together with all his racing friends.

Nellie is definitely enjoying the nice weather and being able to get out and ride her bicycle. Of all the things that we were hopeful Nellie would learn to do, I am so glad she was able to learn to ride a two wheel bike. She gets so much enjoyment from that bike! Jay built her a new bike using Colin's 16" Hoffman frame. I think she feels cool and happy it doesn't look like a "little Girls" bike. LOL. I am so proud of that little girl.

Miss Braelyn took quite the fall on her bicycle this weekend. That little girls hardly ever gets huts. All her injuries were on her face and it broke heart. Poor girl. It's been 2 days and it already looks so much better. Braelyn told us that she wants to start BMX. OMG! I know she would well, but she's my baby girl, I want her to do girly gentle stuff. LOL. I never wanted Braelyn to get involved in BMX because then Nellie will the only one not doing it. I really think it will bother me more than it will bother Nellie. Nel is just as happy riding her bike around the outside of the track and she is too nervous to try going on the track.

I'll do my best to update my blog but this time of year is absolute craziness! As always, no matter how busy things get I always try to just enjoy it. I always say to Jay that someday we will be wishing our lives were crazy with kids stuff and we'll be missing all the noise in our house. We always need to remember to enjoy the moment. It's great advice but not always the easiest thing to do. So many nights I just look forward to the kids bedtime and then I feel guilty because time goes fast enough without me wishing it to go any faster. Slow down people, slow down and smell the flowers.

wooo-hoo!!!!

I was always a skinny little mini when I was growing up, I ate what I wanted and never exercised and I never went over a size 3. Until, I gained over 80 pounds during my pregnancy with Colin. I don't want to be a size 3 again but I'd love to drop 25 pounds. So, I joined the gym yesterday. I'm 36 and it was my first time ever going to a gym, I think that is kind of funny. I really enjoyed it and I hope I can keep it up. An hour a day without kids and I'm not sleeping. It's crazy. There are so many people who are really in shape, I was like wow, I want to look like that. But, I'm eating Oreos as I'm writing this so I don't see any big changes coming soon. At least I'm headed in the right direction.
Nellie came home today with a little story (like a paragraph, it had 63 words). She can actually read the entire to us! I was truly amazed, I was actually crying when she finished and she thought that was funny. She just started this Edmark reading program in November and now she is actually reading! It's only been like 4-5 months. I am so proud of her, it makes me think anything is possible. I told her we would have to have a celebration and she could pick dinner. She said "no dinner" and then did the sign for ice cream. LOL.

Spring Is here!!!

I think spring is finally here! We had such a beautiful day yesterday. We played outside all day, we didn't even come in for dinner until almost 7pm. We have a small house, it's over 100 years old and we are always remodeling. Many times over the past 10 years Jay has said it would be easier to build a new house, but I could never leave this neighborhood! I grew up here and I love it for my kids. I remember several years ago my sister in law telling me she hardly knew her neighbors after 7 years of living there. There are so many nice kids around here, they can easily get a group of 8-10 kids to play hide & seek, basketball, football etc... when I listen to the news I hear about kids not being active and playing to many video games, luckily we don't have that problem here. These kids are always on bikes, scooters or skateboards and in the winter they spends hours sleigh riding at the same hill I used to go to with my friends. They have learned to play together in groups, the more kids the better. They argue but we parents try to let them work it out and they are usually over it within minutes. Some things are definitely different from when I was a kid. I can't let Colin go around the neighborhood alone, he has to be with a friend. You don't hear parents yelling their kids names at the top of their lungs to come home, now we just call or text them on their cell phones. They wear helmets now and drink Gatorade & bottles of water instead of Cool-Aide. They don't spend too much time on swings, they prefer the trampoline. Yes, over the years there have been some injuries, lets see... broken fingers, noses, a foot, an elbow, a few stitches and bruises, but I think most of us Mom's think it is bound to happen with active boys. I've always said that I want the kids to play at our house because then I know what is going on. Because of this I've really gotten to know all the kids, they all know us and they are comfortable at our home. Now that Colin is a little older he goes to the other houses and they all know him and we all look out for each others children. The kids have become good friends over the years and so have the parents.
As our kids get older we get so busy it gets harder to plan play dates all the time, it is so much easier for them to just go outside and knock on a few doors to find someone to play with. We have done some really fun things as neighbors, like a big Halloween party, swim parties, garage sales etc... When we go away I have several people to feed our dog and I've counted on a few neighbors to get Nellie off the bus when I have a conflict. Basically yesterday when everyone started coming out of their houses to say hello & visit it reminded me of a summer day almost 2 years ago when neighbors stood and cheered as Nellie got her training wheels off and rode down the street. I tend to sometimes get caught up with unimportant things and sometimes I have to remind myself to be grateful for the small stuff. Here's to many more beautiful days filled with the screams & laughter of little children.

Proud Mama!

Sorry folks, but I have to brag for a minute. My little Nellie can tie her shoes! She has been working on this in OT and after a lot of practice she can do it! These little milestones are not little for her, they are huge! She is so proud of herself, she even ties my shoes when we are going out. We had a "Shoe tie celebration" and went to Denny's to celebrate. Go Nellie! I am so proud of you. Can a little girl be your hero? Yes, I would say so. This little girl works so incredibly hard to achieve the tasks. Of course I am so grateful for these wonderful people who work with Nellie, she is very blessed.
Several years ago (about 7) we went to a Cri-du-chat conference. One of the sessions was on how to adapt items for our children. I learned about putting velcro on pants instead of snaps, you can even take the buttons off a shirt and put velcro on so the children can get themselves changed. I was so worried about all these types of things and I worried for nothing, she is learning to do it all! Wow! I'm amazed again.

I've decided I have taken on too much and it's time that I start saying no. I really enjoy helping others but I can only do so much. The older the kids get the busier we get, I just can't take on so much. The hard part is deciding what to give up. I wouldn't mind giving up my troop organizer position but who would do it? It is a lot of work. Fundraising for Tri-city is a lot of work, but we really need it. I feel like I have to be Nellie's GS leader so I can help her. I also like being on the board of ECEC, they were great for Nellie and I like paying them back a little bit. Box Tops for the PTO is a easy way I can help but it doesn't take too much time. I gave up my lia sophia and this is my last year as a delegate (I'm glad). What else can I give up? I see that the 5P- society really needs people to do some fundraising and I did enjoy doing my crop in the past, I would love to help them but when? I have to admit part of me probably likes feeling needed, but something has to give! Just writing it all is making me feel a little overwhelmed. No, is such a small little word but it is not always easy to say it. I think I just need to practice sating it.

what a nice day today. It was about 50 degrees and it felt so nice! Colin was going to go over to the shelter to do some skateboarding but it was so nice he wanted to play outside instead. We did a little picking up around the yard, but it was so wet we couldn't do too much. Our yard is a muddy mess but at least it was warm. All the kids in the neighborhood came out to play. We had 11 on the trampoline. (we usually only allow 5 at time but the kids haven't been on is so long) The kids were all riding bikes and hitting the jumps. It is nice to live in a neighborhood where we have so many kids and they all like to play outside. It is so hard to believe how grown up these kids are. I remember the boys with training wheels on and now most of them are in middle school. They used to spend hours climbing trees. Now they love to play hide and seek and manhunt, just like me and my friends at that age. I hope they all stay good kids. Jay and the girls to a long bike ride up to Tiffany & Jim's house. I love spring, it is so nice to be able to just get outside. Our yard looks so ugly I can't wait until everything turns green. I hope it stays nice.

I have a friend that is having her second child, her first child had cri-du-chat. She has had some difficult moments and I have been giving it some thought. I remember after having Nellie I wasn't sure if we'd have anymore children, I always said it would have to depend on the progress that Nellie made. I didn't know how I could carry Nellie around along with a new baby. I was at a meeting one day and a woman came up to me and said I should definitely have another child. She said her husband has a disabled sister and they have no siblings so everything falls on his shoulders. I'm thinking is that a good reason to have another child? The worrying that takes place when you become a parent is insane. I would worry about so many things. When Braelyn came along Nellie was 4 1/2 and she had started walking. I remember how scared we were that Braelyn might have cri-du-chat also. We knew that we love & adore Nellie but we sure didn't want this baby to have any disabilities. We were so relieved when the tests all came back normal. I spent a lot of time worrying about Colin. Nellie had therapists coming into the house several times a day to "play" with her, she spent time in the hospital, she got a lot of attention. I wanted to make sure Colin got enough of my attention. I also worried about how it would be for him growing up with a sister with special needs. It is kind of funny how things turn out. Nellie has been great for Colin. He is such a loving & thoughtful person because of her. I have honestly never in my life seen a brother that is as loving as he is. Of course Nellie has learned so much from Colin. Nellie is 9 now and Braelyn is 5. Braelyn has passed Nellie in most aspects at this point. Braelyn even calls Nellie her little sister. LOL. Nellie has learned SO MUCH from Braelyn, it has truly pushed Nellie to new heights, they have learned together over the past few years.

I'm a believer of things happening for a reason and I know my family happened this way for a reason.

Shriners Hospital

I realized I never gave a Shriners update. I took Nellie over to Shriner's hospital about a week ago. Nellie was diagnosed with scoliosis about 5 years ago. Her scoliosis has progressed aggressively over the last 3-4 years. She is now considered to have severe scoliosis and has a 54 degree curve. Nellie definitely needs to have spine surgery, the problem is she is still small and has a lot of growing to do. They would need to put growing rods in her back, but every time she grows they would have to go back in and extend the rods. This could potentially mean 2 surgery's each year until she is about 14 or so. We are now trying to hold off doing the surgery until she gets a little bigger. This will be a major surgery, they will go in through the front as well as her back. Her brace is helping her curve to stay at 54 degrees, she hasn't had change in a year. Last week they said she is the same an we couldn't ask for more. If we can keep her the same until she is about 14 they will do a fusion and we won't have to deal with the growing rods.

It has been terribly hard dealing with Nel's scoliosis. The brace is uncomfortable and it is hard to fit her clothes with it. She already had problems with her balance and a big plastic brace doesn't make it any easier. The other issue we have is her strength, Nellie is very weak and when she is wearing her brace she isn't using any trunk muscles so she actually gets weaker from wearing her brace. I know she will be fine, she'll get through this, we all will. It makes me sad as her Mom, life can be hard for Nellie. We just have to remember how blessed we are, there are millions of families that trade problems with us.

Time

Wow! It's March first. I have said this so many times since Colin was born that I am sick of hearing myself, but I just can't get over how fast the time goes when you have kids. It really makes me sad. Their little stages go by so fast, I hardly feel like I get a chance to enjoy each one. I remember when Colin was little I thought I would remember every detail, I mean how could I possibly forget the first time he ate cereal? I even thought I would remember what kind of cereal it was. WRONG! I seem to be forgetting everything. Jay has always picked on and said our kids wouldn't recognize me without a camera in front of my face, well it's a darn good thing I've always had that camera. Colin had a project due for school and he needed pictures so I was going through old pictures in my closet. It really made sad, the time has gone by so fast! I have the wonderful memories but we can never get those times back. You can only bring your first child home for the first time once, you can only go to Disney for the first time once, they take their first steps once. Colin is 11 and that means his time at home before college is more than half over, I could cry. These 11 years have flown by, I wish I could slow these next 11 down to a crawl. Why can't something be done about this? With all the technology they can't keep kids little for ever? Well, at least longer? I could go on and on about the changes Nellie has made over the past few years and Braelyn don't get me started! I don't know how I'll ever get through her going to kindergarten, I will miss the hell out of her. So I guess for today I will just enjoy each moment, take lots of pictures and make wonderful memories with my family!

We had a Mom with a 16 week baby post on our yahoo group that she just got the diagnosis of cri-du-chat syndrome. She was wondering what to expect, wow, what a hard question to answer. The first word that comes to mind is "amazed". I am always amazed at what Nellie is able to accomplish. I mean I honestly never thought she'd ever be able to ride a bike without those training wheels. You have to be realistic but you don't want to limit your child either. I was thinking of this Mom and it brought back so many memories, it seems like only yesterday that my house was constantly filled with therapists, we were always at one doctor or another and we had no idea what the future held for Nellie. I remember one doctor saying she would never walk and my biggest hope was that she would learn to smile. Wow, look at her now. I told the Mom to take everything in little steps and not look too far ahead. It's funny the things I used thing were a big deal, I think nothing of anymore. I know Nellie will keep amazing all of us!

Well my little brother Zarek (that still seems very weird) had his surgery a week ago today. He went through the surgery well and is at home now. i have to say though, it doesn't seem like they have anymore answers than when they started. They drained the mass and found a mass on the chest wall, they don't know what they are dealing with. The doctor wants to wait a couple months and do a MRI, Zarek will then be 5 months and a little bigger.

getting ready for shriner's :(

Woo-hoo the kids are off for the week! I enjoy having them home, but it is a lot of work. I just think it's hard to keep the kids busy this time of year. Colin has all sorts of things to do, skateboarding, snowboarding etc... but the girls are a different story. I don't like to complain but I am ready for winter to be over! We are going to go snow tubing tomorrow with the Antons, I love snow tubing!!! And of course the kids do too.

We have to go to shriner's hospital on Thursady and I'm nervous. Everytime we go I think they are going to tell us it's time for surgery. I know she has to have it but I don't think I'll ever be ready. I joined a juvenile scoliosis group on yahoo and it made me realize how bad Nellie's back really is. Nellie now has a 56 degree curve. She hasn't had any surguries since she was little. I'm sure it will be worse now because she knows enough to be scared. It is going to be so hard, she has always been in Albany Med (only 15 min away) this time she'll be so much farther and she'll need to stay 2 weeks!!! 2 weeks is unheard of! She was home within a week after her heart surgery. Wellm needless to say I hope we can just keep putting this off and maybe meanwhile they will find a cure. We'll see what they sat on Thursday.

Colin had a great weekend. He had 2nd's & 3rd's in all his motos and had 7th places in his mains. I'm just happy he made his mains. He is really going to have to work hard this year, he's getting older and the expert class is no joke. It's hard to keep him training all winter, he's still a kid and he wants to hang with friends and have fun. Good Job Colin!!!!!

They are growing up

It is so nice and sunny here in NY. The girls and I decided to go for a walk. We didn't make it very far, it was too cold. The girls wanted to go home and have hot chocolate. I'm so glad Colin has been doing well in his qualifying today. At this stage (being a 2nd year expert) I'm just so happy if he can make it into his main. I honestly didn't think he'd have a good weekend. He hasn't been working on his sprints and he's so into his skateboard and snowboard this time of year. He's really doing a great job.

I can't believe I had to go to Braelyn's kindergarten registration this week. My god, it seems like only yesterday she was a baby. I wish she didn't have to go. She said the funniest thing today. Nellie wasn't listening and I told her she'd have to go sit down. Braelyn says "Mom don't talk to my little sister like that". Of course Nellie is 4 years older, but it is true Braelyn has really become the older sister in many ways.

I also had Colin's question & answer night for middle school. I'm not ready for this. He has been such a great kid and he has such a great group of friends, I worry about the type of kids he's going to meet. I hope I've done a good job with him, I want everything to be OK for him. I just remember too much from middle school, he just seems so much younger.

It's been a little crazy because Jay is now the state commissioner for the NY empire bmx state series. It is so much work and he really wants to do a great job. I know he will, but I also know you can't always please everyone. It's gonna be crazy!!!

Jay & Colin are out of town it's almost 1:00am and I have trouble sleeping...so I'll blog. I've had my Dad on my mind all day today. Honestly, I usually try hard not to do too much thinking when it comes to my Dad. However this is different, my little brother, Zarek who is about 12 weeks old has been very sick. He had pneumonia & was having trouble breathing. He was admitted to the hospital last week, at that time they found a large mass on his lung. His lung has since collapsed and the mass will need to be removed. My heart hurts for my Dad & Grace, I can't even imagine. It is the not knowing that makes it so much harder to deal with and he's so little!

Jay & I have been through a lot with Nellie over the last 9 years. As a parent you just have to deal with what is put in front of you, you don't even think about it. As long as I live I will always VERY clearly remember the doctors taking Nellie away on the stretcher and later the nurse telling us "they are working on her heart and she is on life support". Every hospitalization was hard, but those words took my breath away. When I hear about some one's child going through something like this, I know how scary it is. It makes it tougher when you don't know what your dealing with, your mind can go in all kinds of places. I just pray everything will be OK for Zarek.

catching up

I don't know what I was thinking, there is no way I can keep my blog updated on a daily basis. Well, it is what it is. We were crazy busy during Dec. & Jan. I was so worried about Nellie's school for next year that I was loosing sleep over it. It is time for her to go into a life skills class and it just makes me a little sad. The class seemed like it would be taking a few steps back for her. I was driving myself crazy over it. Jay said "what do think Nellie is going to do when she grows up?" I think she will be able to get a little job. Jay said "does she really need to know the stages of a water cycle? let her have fun at school" So that is what we are going to do. She has amazed us since she was born and I know she will keep it up.

I am constantly amazed at this little girl and she blew us away again. She is reading! I asked for her to start a new reading program "Edmark" and it is a perfect match!!!! She is actually reading!! Does anyone remember when we were told she may never hold her own head up?

Braelyn is still giving me a run for my money, but I am going to miss the hell out of her when she goes to kindergarten. I wish I could keep her little forever, mostly because I can just imagine what our house will be like when she is a teen. The drama is already crazy around here.

I have to brag for a minute about Colin. He received a award at school for being compassionate. His teacher said he is always kind to his sister and all the other Questar kids in school. I was so proud of him. He is a great kid,I keep reminding myself of this because his mouth has been getting a little fresh the last few weeks. I'm not used to that with him, Braelyn yes, but not Colin. He has been putting a lot time into skateboarding at the shelter and it's paying off. He is on his way to a national race in Ohio, I'm keeping my fingers crossed!