One christmas to NOT remember.

         Things are not going very well for us right now, every single year we go through something like this but never this bad...

          Since F work depends on weather and other people, well let's just say that this season its been really bad, we are barely making our payments on the basic things but we defenetly have no budget for the Christmas things, if you know what I mean.... I can care less about things for me or for the house, I don't really care about that, what I really care is for the kids to have a normal Christmas filled with joy, love, family, food and of course their gifts.

       Well not this year, we are so thight that I could only afford a few things for them, and that makes me really mad, it also mades me so mad that I can't spend the hollidays with my family because of some stupid issues between my mom and my brother, I'm so sick of that bs.

          I was going to just drive there and have a few days with them and forget about the bad things happening at home, but its not going to happen.

          My relationship with F its totally broken and the kids can feel and see it whenever we are together, that's just sad to see... They do preffer to be with me than with their dad. I can just say that I had nothing to do with that, they can be with whoever they want, I don't say bad things about him to them.

          I guess its true what I have heard, if you don't show love people won't give you love... I really don't know, that's their relationship not mine... I just have no control over that.

          Everything its really stressful right now, I need to do so many things in the next few months. I just hope that I will have the open doors and the strong mind that I need to do it all. Soon I will start beauty school, and who knows, maybe I will have a bussiness in the future.

               I really don't want Christmas to come, I'm not looking forward see my kids cry their eyes out because Santa only got them sucky cheapy stuff... And I know, I know... They need to be grateful with the things they have... But try to explain that to them?

          

December already

It's hard to believe that December is here, I just can't believe that the year its almost gone. Ashleys new school its ok, I can't tell its awesome or that its helping her so much, I see no advance, only in speech...

          The kids started church school a few months ago, they are doing preparation for their first communion, that its really making me nervious, my mom and brother have issues between them, I want no part of it, but they seriously behave like kids fighting over a toy. 

         This Christmas doesn't look good, not only because we won't go to NJ but because it seems very unlikely that Santa will stop by this year, and that makes me sad. I need to find a way to make things work out the way I want them to.

          Monday already, another week more problems to solve. By the way, I'm doing the polar plunge again Feb second, if you can, please go check my page out and donate, its for a good cause... As always we will post a video on YouTube about it, meanwhile you can go see last year's plunge, my YouTube name is hammy0522. Thank you !

I cant wake up!!!

          Every day I get my alarm and hit the snooze button, and today I did it a little too many times, I woke up like a crazy person at 8:15am, I ran to the kids and woke them up, I don't know how, but we made it to the bus stop at 8:30am.

           From all the days in the week, today was the day the my sons bus broke down, so I was freaking out, it was late and I had to take them to their schools, I was making a map in my head about the fastest route to get to my sons school, and how to get from there to my daughters school as fast as I could. Then like and angel came my friend and told me she was taking her son to school, I send my son with her and drove my daughter to her school.

          She started crying and that just broke my heart, she is having separation anxiety, and I don't really know how to make her feel better, I do tell her that she will see me after school, but its not really working. I will find a way I'm sure, but I will need help with this. 

         Today I found the best make up ever, I herded so many good things about the Kat Van D tattoo foundation that I just had to try it myself, so I went to get it, and  its just amazing, I love it!!!

         what a boring day I had, at school we had a sub, again... She is nice, but wont explain what she is doing, I cant wait for my teacher to be back, the classroom is really cold, I cant even concentrate, so next week I will bring a little blanket, I told everyone. The girls at my table have a blast in class with me, I'm such a clown.  I don't mean to be a clown, I'm just been myself.

         

I'm back....

First of all I want to apologise for been away for so long, life its been hard.
I need to update all of you about what's going on, I started school and its really hard to keep up with everything, all the Dr. Appointments, therapies and house chores are not easy, and if we add all of the extra porblems...
Well its just been overwealming for me.

Medically everything its been the same, we found out gastro issues with my kids, yes... Not only my ws daughter but my typical son as well.

Winter its almost here, and that means Santa will be coming soon, the only problem its that Santa won't bring much this year, he is really struggling right now.

For now we are starting the blog again and soon we will return to our daily YouTube vlog.

Rush update

Wow, its been such a long time since I wrote something here... I'm sorry, I haven't had much time left, but here... Let me tell you that thanks to our amazing PT my daughter was approved for a stroller, that really helps with so many things... We can now plan trips to the zoo or long wakings around the neighborhood, Ashley is improving so much in so many things... She was able to do her name by herself without help, she is getting stronger too.

My son is been extra nice to me... he is such a sweet boy, everyday he will come and give me a neck massage, bring me water or something to eat, he is such a big help in the house too, he knows how to make me laugh all the time... 

F has been working and working, even weekends, I miss him, he is never home, that's just sad, the kids are home all day long since they are on vacations... that drives me nuts and some days I want to pull my hair out... 

We found this game called no zombies allowed, we play it and some days my son and I have this little races about who can make more money or have more houses and businesses... so far he is winning... little stinker

I want to loose some weight but its really hard, especially when  I have to cook them yummy food, and I have to eat like a rabbit... not fun... 

My sister in law gave me a pack or some weird canary seed to loose weight, and yes its for humans... lol, it helps me be less hungry and its supposed to help me loose weight too... we will see... so far I feel like a bird... like "big bird"... lol you know, the one on sesame street!?....

We survived the "derecho" storm, we were without power for only 24 hours... nothing major here but some other people had really big problems with that storm... it was really scary and I am not going to lie, I almost pee my pants... not really but it was bad... The kids were also very scared and freaking out...

So far this is all that has been going on... some pool time, getting ready for a family trip and just chilling here in the house with the kids.




  

Memorial Weekend!!!

This weekend was a bit nuts, I had lots of plans and everything had to be modified, I wanted to go see my family to NJ, but at very last minute my mom called me and told me she was coming Saturday... I was going to go anyway since we had tickets for a soccer game... 


But when F checked the tires... problemoooo!!! they needed to be replaced!!! What a fudgeroo... I had to stay... I was all sad and I was really about to cry when he told me that we could go buy some used ones to replace them and go to the game Sunday...


We spend the day with my mom and her political family, they ended up staying here too... :\
Sunday morning we left.... lol she staid here wahahahha


When we arrived at the stadium we looked for mu brother and his family... we had an awesome time there... the game was awesome, everything was great until some guys started a fight there and the police came and asked everyone to go home... so we had to take the party to my brothers house...


I had a jar of sangria... please don't ask me the name in English cause I have no idea... it had mango chopped, well I was drunk in no time... the kids where in bed and sleeping so we could have a grown up time...

Monday we went to a park, its so beautiful, you can see the Washington bridge from it... so beautiful...

we came back that day, the traffic gas not bad, and hubby invited us to eat at a chines buffet... 


That day even the dog had to take a shower, he was all stinky... crazy weekend we had, but the kids had lost of fun and enjoyed the trip so much...

Williams Syndrome walk...

First of all I have to tell you that I have been really sick and that's why I haven't updated the blog, This last week was really busy and hard for me, a lot of things to do and without energy or health its just like poo in a shoe...


Today we were supposed to have practice at 10am... But our awesome couch cancelled the practice and instead of that he joined me and Ashley this morning with not only his son but more awesome people from our area for the Williams Syndrome walk, it was awesome...


This was our very first one, I saw many of my FB friends there and got to meet new parents and kids, I felt really good, it was the first time that I could let Ashley play in the playground without worrying about other people judging her or asking questions... 


My son had fun as well, my best friend was there, even tho she had lots to do today, she was there to support the walk... 


Everything was perfect until the end, Ashley got punched on the stomach by a typical kid there, it was not a happy moment for us, but I think I did the right thing, I asked the boy to take me to his parents and I told them what he did... His dad was not really happy about it but he told me he was going to put the boy in time out...


After we came home, I was so tired I wanted to take a nap, but the kids had so much energy that it was impossible, They started playing with 2 boxes, they put eyes on the side of it and made a hole for their head to put in it... 


Have you seen the guy that is on the videos of LMAO?? the one with the box instead of a head?... they wanted to replicate that, and after they started dancing with the box on their head... lmao that was funny...


This kids will always find a way to make me laugh... then they had a pillow fight and all I could hear was their laugh, that sure makes me feel like I'm doing something right...

I feel miserable ...

It's been a few days since I wrote something.... I have been feeling sick and also I have been so busy, last Saturdays track meet was so awesome, just like the first one...
Ashley got to do standing long jump, 50 meters run 100 meters run and relay, she did awesome...
Sunday I had plans but I had to cancel it cause I woke up with my eye so red and swallowed, the darn thing stayed like that all day and Monday, but in the afternoon after taking Ashley to her OT therapy my eye was worst, and my ear was bugging me too, right before dinner I was going to change my scentsy scent and I got my favorite one jumping jelly beans... But I felt so bad, I was going to puke.
And then I was serving dinner and u had to run to actually vomit, everyone on fb was telling me that was a sign of been preggo... But I'm not. Today I had to go to the doctor cause I was feeling miserable, I had to get Ashley ready for Pt and Alder went to school on the bus, I called my doctor but they didn't answer so we went to the therapy and after that I went to the doctor...
I'm all broken, cause I have an ear, eye and throat infection...

oh my eye!!!

This weekend was fun, exhausting and exiting at the same time... Ashley had her first competition and let me tell you that she did awesome... ran like a champion and did all she was told to... I almost cried when I heard all the crowd cheering for her... 


It was far away, but the place was awesome, so many people and it was filled with enthusiasm and good vibes... everyone was hysterically supportive, I just had no idea that the special Olympics meet ups were so nice and invigorating, I can see myself next week there regardless of been tired or anything...  


I took a lot of pictures and video, I cant help but smile when I see them... After the event was over we dared to go to a party, it was as far as the place we went to the meet... Its a farm a milk farm, but they have  other animals and its awesome to see  the kids play and be able to run without worry that there will be cars or danger... 


Ashley was amazed with the goats, she was petting them, and they were so good with her, after that she started chasing the rooster chickens... They also behave so good, they didn't attack her even tho she was really trying to get them... 


But the fun part was that after a few minutes I walked to check on her and I found her inside the chick cage, chasing them... And right after I said Ashley what are you doing in there, she graved one chick by the neck and told me... "look mommy a chicken", I had to ask her to not choke the poor chick and to leave them alone, not before taking some pics of her been inside the cage... 


She had so much fun, then they found a frog, or toad, I don't even know what that was... but I had to save his life cause they wanted to put him under a lot of grass... and right when I was relaxing thinking that they had no more animals to chase... I heard my son say... Look!!! AFLAK... !!! I was like what?? and then I saw Ashley trying to get her little body inside the duck cage... 


What is it with my child been so curious about animals all of the sudden?? she was not like this a few months ago... 


We came back home way too late, and the way back was not so nice, since I had to drive back home and I had this thing going on with my right eye... its all red and it hurts, it looks like someone hit me, the weird part is that F has the same thing on the same eye... But his is now not as bad as mine.


Today I had to take Ashley to the cardiologist, they did the annual EKG and  ultrasound, the results are the same as last year, no change on the blockage she has on one of the main arteries of the heart, and the abnormal  palpitations are the same way they were last year, so no more cardiologist for 2 years... That is good news, no restrictions and she has the OK to do the special Olympics track season... 


She was so tired after yesterday tho... and now my arms and legs are hurting cause I had to carry her after the event was done, she was beyond tired, she had no energy to even hold on to me... poor baby!!! But I am so proud of her... 


Tomorrow we have PT and we must start OT as well... 


Again I have this feeling that I want a baby!!! but I know that it will go away soon, I was holding my friends baby, she is super cute, 3 weeks old and loves my arms... she didn't cried and was so nice to have her... She reminds me of Ashley when she was a baby... awesome memories, and that reminds me that I need to make a video about Ashley!!! 


For now that's all that its been going on, I read the last few post of this blog and they are so adult like... Wow, where is my fun going?? 


Oh I almost forgot this part... Sunday morning we had to be at the meet place at 9:30am, so I was ready to go at 8:00am, and we did, only to found out that I forgot the bag with Ashley's uniform and our lunch at home... it was 8:30 when I notice the bag was not in the car, what a fudgeroo, we had to come back home, I was so upset with myself, I wanted to cry, I send a text to my friend as ask her to please register Ashley for me, I was going to be so late, but I was determined to get there... What a ding dong!!! how could I forget something that important!!! I rushed to open the door only to find that I had not only forgot the bag but the video camera... really?? what a ding dong hopper I was to forget such an important bag... don't you think?


That was the mayor Fudgeroo of the day.

How unfair all this is!!!

Its been a hard week, I have been working at school every day helping with the book fair, its fun to do that... I like working with kids, and I discovered that I like kindergartners better than older kids...
  
On the other hand I had a call about our schedule for OT, and it will be a bit problematic, since they want to see Ashley 2 hours a week the first few weeks and then it will go to an hour a week, the only problem is that I will have to go 3 times a week there, cause they want to see her Monday for OT, Tuesday for PT and Thursday for OT again... they will try to squeeze us on Tuesdays, so I will have to take her there only once a week... we are talking about a 45 min drive, and the gas is so expensive that I cant afford to do that 3 times a week...


Right now we are having some problems with money, F will get paid next Saturday and we have a few hundred to survive the week, the bad part is that we have to pay the rent and some bills in the next few days... our credit cards are almost on the limit and I haven't heard anything from SSI... We have a few groceries left that I will have to make it last for the week...


Tomorrow we have to go to our first special Olympics competition, and I wish we didn't had to go, since its so far away and that means expending money on gas, I will take some food for us, and hope that we will work something out for the week...


We always do at the end, I get to be creative with food and basic stuff, at the end is fun to do it with the kids, Today Ashley was really upset cause she wanted to buy ice cream from the ice cream truck, but I got her happy again when I gave her some Ice cream that we have here in the house, I told them that this one is way better than the one they have on that truck... I cant tell them that I cant buy it for them, they don't have to worry about money cause they are not supposed to... that is my job not theirs...


We played for a few hours, and watch movies here in the house, Alder is so happy with his books, I got him some cool books for free since I got vouchers  for helping with the book fair, The weather is been a bit crazy, right now is raining and I cant sleep, I don't like storms, my ferret is sleeping on my lap and I should be looking for my Ipod since I use it as my alarm and I think it doesn't have battery... Ashley was using it all day long...


Its so hard to not think about what will life be once we get to an old age, I watch my ferret and I feel like I don't want to be that old, he cant barely walk and cant make it anymore to the litter box... he is loosing his hair, and will sleep almost all day long, I don't want my son to take care of me, and who will take care of Ashley? I know there is many that will take care of her, but I just cant help it, I worry too much about it!!!


I also have all this sadness that I cant control, I feel like crying, screaming and trowing a tantrum... there are so many thing going on right now that I cant believe how I take care of everything like nothings up...


The only one that seems to notice is the dog, he comes to me and stays close to me, as if he knows that I need someone to be with me, I haven't talked to my mom and sister in a month or more... I have no time, and whenever I find the time, its late or they are working... I hope that they wont feel that I don't call cause I don't want to... because that is really not the case.


Some people is making me feel like I shouldn't apply for help, like SSI... Someone told me that because people like me the system is the way it is... and that really doesn't make any sense, cause I am NOT making things up, I am not abusing the system, and I didn't lie to them about my income or Ashley's disability, I didn't apply because I feel its cool to have a disable child, I might get an stroller, but I would give everything in this world to not have a disable child, and I'm not saying this in a bad way, I love my daughter, but I would love to be able to do normal things like taking them to the park, zoo or mall without worrying about my daughter going  with a total stranger and not even feel fear about it... I would give my own life to have my daughter as a typical child...


But I cant... and if I need an stroller for her, I shouldn't have to explain that to people, I will gladly explain why I need it to doctors and other providers, but not to random people that cant understand what it is to have a special needs child...


I am upset with life, and not because of me, but because it will be my daughter the one that will deal with this condition for life, she will want to do things that other people do, like drive a car, go to the mall by herself or with her friends, get her own family and kids... and then what?? how am I going to tell her that she will probably have to forget about that?


My best friend always tells me to live one day at a time, and I do try to do that, but sometimes I cant help it... I don't want to be mad at God, but in a way I am!!! its very unfair, even more when I see mothers that have typical kids and they just don't care about their kids, or when they take the life of that child, Many will be mad at me or will tell me that God is awesome etc... And maybe he is been awesome to you, but he hasn't been that awesome with me...












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sounds easy!!!

OK, talking with a friend last night made me realize that many have just no idea what is to have a Williams Syndrome child, now, I will talk about how it is here in my house, but remember that every child is different just like typical kids...


I will tell you step by step how my day goes...


I have to put on at least 5 alarms to get myself up and ready to start my day, and the reason why I do that is not because I'm lazy and I don't want to get up, but because I am exhausted most of the time, I will go to sleep every night at around 2 am, and its not because I want to become a vampire or I'm having fun so late, but because I feel like I must make sure that Ashley wont wake up at midnight vomiting, if she does, she wont call me or get up, she will just start crying very quietly... and I also have to make sure that my son doesn't get an asthma attack, they usually come at around 1 am or so... but I cant tell if they will come or not...


OK, so after I get myself up my bed,  I will go wake Alder up so he can get ready and he can get the dog out, that's his morning job, in the mean time I will wake Ashley up and get her clothes ready for her approval... Yes, she is really particular about what she will wear, after she did approve the outfit of the day, I will put it on her, everything including socks and shoes, after that I will call her to fix her hair and brush her teeth, then its time to get her book bag and snack ready... if they are riding the bus that morning I will take them to the bus stop and wait with them until the bus gets here, but if we are all going to school they will ride with me...


Once at school I will send my son to class and get someone to come to the office to get Ashley, (cause I am not allowed to take her to class anymore) she has a bad day if I do that... Then I go to the school store and help there, if there is anything else after the store ours that needs to be done I will usually stay and help, on Tuesdays its a different story cause I do the same morning routine but instead of getting someone to walk Ashley to class, I will take her to the store with me, and then after that we will go to her therapy, its a 40 min drive, then if we are not to late to come back to school I will take her back, if not I will just keep her for the day, so after all this I will come home and fix lunch, take my medicine and get the dog out, start my cleaning and check my emails... 


At around 4 I will go get the kids, I do have to wait at the bus stop at least 10 minutes, then I will get Ashley off the bus, yes I literally have to take her off that bus... Give them something to eat and ask my son about 100 times to clean his room, do his homework and chores... That usually will drive me insane and I will end up taking my happy pill before getting really upset, if that day is grocery day, we will have to go to the store and buy some groceries... come back home so I can fix dinner...


Once every 3 weeks I have to take Alder to his allergy shoot, and deal with traffic and them fighting all the way back... 


after dinner they have time to relax for a little bit before taking a shower, and yes I have to give Ashley a bath cause she cant do it by herself, oh and lets just add all the extra stuff that I have to do with her everyday, like practicing letters, numbers, colors, shapes, playing with her, and wiping her butt... remind her a 100 times a day to wash her hands and flush the toilet... be nice with the ferret and dog, get away from the stove when I'm cooking and to not open the door ever... to get off the chairs and to not jump on the bed, to check on her every 5 minutes to see what is she up to, and to multitask at the same time... 


If we have an appointment that day.... well lets just add it to all the things that I just told you about... 


On weekends its a bit different, Saturdays we have practice for special Olympics, after that she is exhausted and wont want to do anything else, so we are usually home, cause she cant walk much without asking to be carried, and she is now too heavy for me... Their dad wont help me so everything needs to be done by their favorite person "me"... 


On top of all that if F wants me to go to the bank or do something for him, that will just add to my day... 


So now you know how a day goes in my house... I almost forgot... 


Ashley will ask unstoppable about events like Halloween, her Birthday and other things, EVERYDAY!!!  

Am I Pregnant...o.O!?

I started taking supplements, I need more energy cause I just don't have any, my day goes so fast that I end up with lots of things that I didn't had time to do, and that its not good cause then I have all this unfinished things that must be done!!! 

My son had a science project a few days ago, I ended up helping him with it, but today he had an event at school, and he had to go do his presentation about it... He had so much fun making that volcano erupt lots of times...

We had PT today and I asked the therapist about a recommendation for Ashley cause she gets tired so soon when she is walking, and most of the time we have to carry her, or just don't take them places cause of that reason, she will walk for 10 or 15 minutes and then she is tired and wants to go home... I just know that it must be so hard and tiring to walk on your tip toes all the time...

So I ask her!!! cause we wanted to get a stroller for Ashley but she is now too big for them, she was so nice and told me that we can get a special needs one for her and my insurance will pay for it, we have to go through the process but its OK... At last we will be able to go to the zoo or a museum, a park or just walk around the neighborhood without worrying that she will want us to carry her around...

Oh and no I'm not pregnant... lol I have this intolerance to some foods and the reaction is a belly like if I was pregnant, I looked at myself in the mirror and I was surprised to see a belly of a 6 month pregnant women... it hurts so much tho... I'm so not enjoying this... at least when you are pregnant you look like that for a reason, but in my case, well its like poo in a shoe... 

We also went to the book fair at school today, and Ashley wanted a toy from there, and a book... I asked her if she was going to pay for it and she said YES!!
so I let her, but when it was time to pay she got very upset because she only wanted to give them $.25 and she had to pay $7.50, she was not happy, but she paid for the toy, I had to pay for her book, thank goodness I had a volunteer voucher and that did covered the amount of the book... 

I missed a big event that my best friend son invited us to... But I had to take my son to the science fair :(

I got The Hunger Games book, and I cant wait to read it... 

you can now comment here if you want without registering to do so, and don't forget that I have a tweeter, YouTube, facebook and instagram... I should write the info, right?? well if you read my blog you know where to find it!!!! 

Insomnia and pain

It's been happening for a long time now... I can't sleep at night and i end up sleeping no more than a few hours a day, I look like a zombie...

On top of that I have a pain on my left side of the neck and goes down my shoulder, my hair keeps on falling down like a ding dong hopper....

I have no time for myself I cant do my nails anymore cause of the smell... That will make F have an asthma attack, I don't really have time to do my hair, keeping up with my roots its not easy...

I need to win the lotery so I can go to a spa and have a day for myself... I will just keep dreaming about it.... Lmao.

Let's talk about what's been going on... We had training Saturday and Ashley will be on the special Olympics tournament next Sunday... She had fun Saturday but at the end she was not so happy, cause she was really tired... It's just not easy to run on your tip toes... Poor baby...

Sunday was a lazy day... It was raining and i was not going to get myself wet so we staid home.... There was nothing to do anyway.

Ashley its been complaining about a bellyache and that really concerns me... It's not normal to have a pain like that on a regular basis.... I was also thinking that she is now seven... Could it be her period coming?? I hope not... She is so not ready and neather am I...

I should go to bed... We have therapy tomorrow and its late...

Last minute everything!!!

I had such a hard day, today Ashley had to go to the pediatrician for a check up, and for the sport physical, she loves to go to the doctor.


We got to see her amazing pediatrician, she is just the best of this world... Ashley is up to date with vaccinations and she only had to give me something for the allergy that she has... we are going to do all the blood work after the Nephrology appointment...


We got home and had a nice lunch, it was too late to take her to school anyway, what made my day go nuts was that today was the last day for my son to finish a science project, and he is been so lazy that he had nothing done...


after I picked him up I drove to the store, only to find out that I didn't had my purse with me...Ding... What a fudgeroo men... I had to come back home, and then go again to the store...


We got all the materials and came back home, we found F outside cause he was just coming from work, I had to give them dinner, and after that we started with the project, a baking soda volcano...


Easy right???? WRONG!!! freaking thing was hard to make and it took us about 3 hours to finish it... 


I was so mad at my son for doing this, since he had more than a month to do it, and I kept reminding him about it, I even told him that I didn't wanted him doing it the night before it was due, lmao and that is what happen....


Even Ashley was helping... poor baby had to take a quick shower cause it was so late and past her bed time... I didn't had any dinner and now I'm so hungry... I will have to sneak in the kitchen.


Oh and let me tell you what happen to me the other day... I had this camera that was almost a year old, it was giving me so much trouble, the videos had a clicking sound and the pics where not the best... I had taken that camera to repair center 3 times and I took it back cause it was again going all funky on me.


I walked into best buy and told the geek squad guy about the camera... and he was like... Oh... well since its been at the repair center 3 times, we just cant send it again, for a second I was like " OH Fudge" but then he told me that it was time for them to give me a new camera, WOOHOOO, I was so happy!!!


He started all the paperwork and then he had to call the supervisor cause he was having an issue... but after he was done he came back with a little box, and he told me, that they didn't had the same camera anymore, and that he had to get another kind, when he showed me the box I said, Holly cradmolly... it was a better camera, mine was a sonny and inside the box was an Olympus with better pixel quality and zoom... able to take pics in 3d and HD videos... 


Of curse I was going to take it, and the pictures are amazing, and so are the videos... I was so lucky...cause the supervisor approved it, the issue was that the Olympus camera was not the same price as mine, and cause they approved the exchange I didn't had to pay a difference... I just love my new camera...   
   

I hate allergies!!!

Like you all know the weather its been nuts, one day cold, the next hot... Pollen everywhere and its just so hard to deal with all the allergies, my older son has so many allergies, he wants to be playing outside but cant, cause poor baby is allergic to trees, dust, grass, pollen and so many more... its just crazy...


Now, Ashley is showing signs of having allergies too... arrggg that really sucks, I really don't want to add another doctor to the extended list of doctors she already has... 


I really don't know what will be best!? maybe it will help but a weekly allergy shoot its not something she will like or want, that's for sure...


We had to take the carpet off the living room due to severe asthma that F has, now the cleaning of the floors will really be a challenge, today I moped the floor at around noon, and a little after 4pm I noticed that it was so dusty and with a lot of dog hair, ( I was chillaxing on the floor, lol don't ask)just perfect for me cause I have all day long to clean the floors... lmao


Oh well I guess that will have to be done once a day and I should stop been so paranoid about the dog hair...


Tomorrow is a good day, we finally have the evaluation for private OT, I really want them to give me the appts the same day we have PT, so that way I will only make the trip once a week, I can only hope that things will be this way, cause if they have other plans, there is not much I can do...


I actually should be sleeping right now, but I cant sleep, that really sucks big time cause I must get up early to get the kids ready and myself cause we all have to go to school, they go to learn and I go to help with the school store.


I must keep myself busy all day long since I have this feeling, this need of a baby...


My family its complete, and I feel like I shouldn't be thinking about this, I have a boy and a girl, I need to focus on having the time and energy to take care of my little Ashley, how could I have the time and energy to do all that I have to do with a little one needing so much from me as well!!! 


Its sad but I cant have another baby, I don't feel like its fare for Alder and Ashley... even more for Alder cause he is the one that has to help me most of the time, I don't have a lot of time for him, and he does complains about it, so how could I do this to them??? 


I really need to get this feeling out of my system for good...

spring break

This week its been so not easy for me, the kids are on spring break and on top of that I had so many things to do this week, they want me to take them to the store and they want to eat out, but I cant really do that!!!, we are not so good with money right now... 


Their dad is working everyday Thank God, but with all the gas that I use every week, (for appointments and therapies) it makes things harder and harder... Plus this kids eat so much, I don't really think they eat this much at school, now I think they are always hungry when they are there...


So good that today is Friday, tomorrow we are going to the Special Olympic practice, I was thinking about going to the Williams Syndrome walk in Frederick MD, but I have to ask first, cause last time I set up something like this I got in trouble... 


It was for the polar plunge, "F" lmao, I will name him F cause he doesn't want to be named on my blog... oh well F made plans that day and we had to come back from Virginia Beach the same day of the plunge, cause he made plans for the night, I was so mad at him... 


I didn't wanted him to go with us, but at the end he made a big drama and he had to go... so before I get all mad again because he will tell me something like, "you never ask if we can do this or that" I will ask him, just this time tho... lol


I never do... wahahaha but I was told by someone that when we are told something we do or we don't do, we should try to improve ourselves by not doing it or doing it... I don't really know if that can improve my relationship with F, cause right now its a total drama...


Don't worry I wont make you read all this drama of my life with F, cause its not important... lets keep this for us and not involve anything that has issues with F... unless its affecting my or my kids life really bad... 


For now its not a big deal... My brother will be moving so far away soon, and that really makes me wonder so many things... I don't want him to move, at least not so far away, it will be impossible to see them, we always have a great time when we can be with them... 


I have a few more months to maybe spend some more time with them... my brothers family its so fun and awesome... I will sure miss them.


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Fear and pain

Today was PT day... or as we call it, stretchy day...lol the kids are on spring break and that made my day a bit better, I had to deal with a little traffic going to the appointment, but nothing major, we had so much fun watching Ashley push herself in a little car with her legs and then with her arms, after the therapy we stopped by  my sister's in law house, so the kids could play with her kids... when we came back it was already after 4 pm so we went to buy some things to fix dinner, or as we call it... ding dings... 


After day I had to get all the papers for Ashley ready for tomorrow, we have an appointment so I can get Ashley's SSI, I have never done this before and I am so clueless about what I need and what I wont need... 


Ashley has a funny reaction to  pollen her eyes will turn red and she will have a green discharge, but as soon as clean her eyes and get her indoors it will go away... its so unusual it has never happen before, I will call her pediatrician tomorrow and see if she can be seen..


nothing exiting today I know, I had a blah day and a sad night, when I got online and saw that a WS baby got her wings today... I couldn't hold my tears and I had to stop and go to the bathroom so I wouldn't upset the kids... I told my older son that saw me after a few minutes an noticed that I was crying, my Ashley heard it and said its so unfair, and started to cry as well... 


I cant help but worry about my girl, cause we WS moms know that all this issues can show up any time, and how hard and dangerous they can be to our kids.... 


I can only pray and hope that Ashley wont develop any life threatening conditions, cause I don't know if I could deal with that, I'm not strong enough.... 

Physical Therapy

Now that My daughter has Physical Therapy I can see improvement on how she is walking, even tho she doesn't like when we have to do the stretches its very important to keep doing it, she is walking but not the "normal" way... 


Making her exercise is such a challenge, the only way she will do it is if she is not aware that she is doing it.... do I make any sense?  playing and doing everything fun for her... Not easy I have to say, we will be doing lots of "therapy exercises" outdoors.


And talking about outdoors, have you all notice the amount of mosquitoes we have? they always want to eat me alive, its not fun to be all itchy, today they got me good, on my back and arms, I should look for some natural way to get them off my skin...


I need a scouter for Ashley, so she can do some of her exercises, good thing is not very expensive... I will get it soon for her, she has been doing lots of paying with the therapy putty, I added some beads to it and she loves to get them out of it, that sure will help getting her fingers stronger, she is not able to hold the pencil the right way, even tho the school OT said that she is, she is not, she has to be reminded to hold it the right way, and when she does, she soon gets tired and starts holding it the wrong way...


Its going to be fun seen her with the things on her feet, they wrap around the feet and make noise, I'm sure that the dog will be chasing her... lol


My sleeping patterns are so messed up now that I cant even go to bed early, I think I will ask my doctor for some sleeping id... Nothing else going on... at least not important enough to be shared here... 


I was told once that if its not important, we shouldn't give any energy to it... I think that is true since if we do give energy to it becomes a problem... smart move ha...  


Have a good night and I will try to blog more often... 

Amazing weekend

Such a long weekend, we had so much fun, Friday was a bit hard, it was Ashley's birthday, she is now 7 years old, my beautiful baby is growing up so fast, she woke up very happy and loved that I was singing happy birthday, I got her ready for school, after they left, I started cleaning but somewhere in between there I got a call, I had to take my pregnant friend somewhere, so I went to get her, I had to stop by Walmart to buy the cake, and rush my way back home to get all the things that I needed to take to school... 


The cake was so good, chocolate like Ashley asked... she was so happy, the only problem was that I didn't knew that it was Dr Seuss day, and that they could go dressed as a character, we totally missed that... 


Saturday was very exiting, I had visits, so we cooked and had lots of food, it was delightful, awesome to be with friends around...


And today, I got to be with my pregnant friend again, we ate with her family, they are so sweet and we just love to be around them, now I'm super exhausted all I want is to go to bed, but I'm waiting on the dryer machine to be done, argg that is not fun at all... I wish I could just go to bed, but we need our clothes, I'm sure that by the time the dryer is done I wont be sleepy anymore... 


I need to go back to the gym, I just don't know if I will be able to do so... its so hard when the gas prices are so high, more than $4.00 per gallon is not easy to afford, even harder when your vehicle is a monster like mine... 


If things keep on going this way, I will end up riding a donkey... how can we keep paying those prices? its crazy!! we don't get more money a month, but we are expected to afford the price of gas?? I have to take my daughter to her therapies... I just hope that my husband will actually work everyday, cause if he doesn't, well we will have a serious economical problem... 


I wont think about that for now, I will live one day at a time like I do all the time, its just the only way... 

say what??

What a day I had, in the morning before taking Ashley to her PT we went to the school store, and the school has some eggs in an incubator, it was so cute seen Ashley looking at them and singing to them to come out, when we came back from PT, I took her to school and a few minutes later the first egg hatched, such an awesome thing to watch, all the school was able to see it, cause they had it on their tv's...


Then I had to go to the store, and I used my very first 6 coupons, I was so nervous about them, but they worked fine... now I want to learn how to buy with them and save lots of money... I got a lot of things that we needed.


after the kids came from school, we went to buy some dirt so I can grow some vegetables, I'm very serious about saving all I can this summer, things are not looking good with my husband, and I have to save some money just in case, better safe than sorry!!! 


I got lots of seeds and I will start tomorrow with my new garden, that is if my ferret wakes up tomorrow, he is so old that he needs lots of brakes to go eat and get back to his bed, he shakes if he is standing up eating or drinking water, he is been with us since he was 4 months old, he is now more than 8 years old...


I had to talk to my son about this and he said good buy to him just in case, I don't really know how to explain that to Ashley, she loves him so much, he is her baby, its going to be so hard once he is no longer with us, but I'm not buying another ferret, they are so high maintenance, and I don't have the time to play and teach all the rules again...


he is one of the best pets I ever had, and the coolest one, I will get a ferret tattoo just cause I love him so much and he deserves to be remembered for ever...  I want another tattoo, I want a WS one, but I want to modify it a little, I hope its OK... I might have to ask...


we had a nice dinner and the kids had fun after, I got the crayola finger paint and crayons for bath time... and Ashley love them, she usually cries cause she doesn't want to take a shower, so today I made a bubble bath for her and she was playing with the paint and the crayons, she loved it, I am so letting her do this if not every day maybe I can alternate between the bubble bath, the paint and the crayons... 


She was asking me if she could do it tomorrow again... that was a score for me... 

Oh Monday!!!

Today I had the chance to do lots of things that I kept on putting behind, after the school store, (I volunteer at my kids school ) I went to my friend house, I had some little things for her girls, I called her and she was getting ready to walk her younger child to school, so I told her to wait for me so I could take them, today was really windy and kind of cold... 


After taking them to school, we went back to her place and I had a nice cup of coffee, we talk and made some phone calls to different places to make some appts, we had a good time, I came home and I started the cleaning here, it was a lot!! cooking and cleaning at the same time, after all that work, it looks the same way...


My work here never ends, I had to yelled at the dog, he was been mean to Ashley, he is still grounded, lol... he is in the corner of the living room looking at me with his sad face, poor baby!! 


not so interesting day I know, but I did lots of cleaning and I'm proud of it, I'm a bit annoyed by the ferret tho, he is so old that cant make it to his littler box, and he will poop everywhere, so I have to be bleaching that floor lots of times because of him... 


I cant wait till spring break... I want to do lots of things with the kids, its going to be fun, for now I must plan Ashley's B-day at school this Friday, I have to send a note to the teacher tomorrow, and I have a field trip to pay for... my son will love that field trip... OK its bed time for me... Bye bye

what a fun weekend we had

Sunday already!!! wow, this weekend went fast... we sure had a blast, we finally decided to go to the baby shower, and the person that II had the issue with was nice and all, I'm the kind of person that if you talk to me I will talk to you... 


We talked about random stuff and had fun... her kids behaved well and I had no problem with anyone... we came back home a bit before 5 am, they didn't stay till then, it was only my pregnant friend's family another person and us... we talked about lots of things, including what they think about WS, and what they think Ashley will be able to do in the future... they really have very hi hopes and expectations for her, and that is awesome, we have a lot of people that love our kids and care about them, that is the best feeling ever!!!


After we got home, the dog was very happy to see us, we all went to bed to sleep, in the morning Ashley had to go wake me up, she was hugging me and telling me that she loves me so much, after having her on top of me for about 30 minutes I got up, I gave her chicken nuggets and I fixed something to all of us to eat later...


Chinese food was the option of the day, so after we ate I had to go back to my friends house cause I forgot my purse there..lol. I cant even believe that I did that, when I got there the girls, wanted us to go with them somewhere, but I was by myself, hubby and kids were at home.


I'm really exited that my friend will have her baby any day now, she has 4 girls and this one is a surprise since we don't know if its a boy or a girl... I cant wait to see the baby and be able to hug him\her, since I wont be having anymore kids this baby will get lots of attentions from me... 


Ashley's Birthday its Friday, and she wants cupcakes that day, I will bake some and buy some pizza so I can take it to her class... she will be seven, they are getting so big, super fast... I need to buy her a gift and start planing her party... nothing big tho... but I'm sure that she will be so happy to have a few friends over that day... 

Friday at last!!!

Today  was a fun day, it started a bit wonky... we totally woke up late and missed the bus... I had to take the kids to school and after that I went to Ashley's Godmothers house... after chilling there for a bit, we went out to buy a gift for Ashley.... she is going to be seven next Friday... my baby is getting so big, anyway she got her a bicycle... now, how cool is that? she loves my kids so much... I did got a few things for them too... after that we had to go get lunch... so the choice was Chinese, yummy...

After that I got time to be with her for a bit more petting her dog... she looks just like my dog, she was a bit nervous tho, she wanted to bite me, yikes... but after a few minutes she was loving me... lol

The weather is been really hot, that just drains my energy somehow... but other than that everything its fine, my friend called me today, she wants me to go to her house  tomorrow but, she is having a baby shower organized by a person that doesn't talk to me, we had an issue sometime ago, her kid said something about my daughter... He called her crazy, and I had to tell his mom, well she took it all wrong and made her sister in law to uninvited us to her kids B-day party... well, I don't know if I should go or not... arrggg I would love to be with my friend but I don't do well with long faces...

I have to think this one... for now I should go to bed, its late and tomorrow I have to get up early to have a delightful breakfast for the kids, Im sure they will love some pancakes... have a good weekend...

Busy month!!! I need a break

We have so much going on right now, between PT, school, Dr appts and our daily routine, I have no time for anything else... the house is been neglected and I just feel like I need a long nap to get some energy back... 


We finally got private PT, that is awesome, BUT... its so far away, its a 40 min one way drive, gas is so expensive that is literally making a big difference on our budget, on top of that we had to go to all the yearly check ups... 


First one on the list was Genetics... So yesterday I took her to her pt and after that I had to rush home to get my older son, my husband and go to Children's National ...


I don't drive to DC so, hubby had to drive :P after a long, long wait, we had a lot of questions answered, about anxiety and behavior, about school and home issues, next on the list cardiology... 


For now, I can relax a bit... in a few days we will have to do all the blood work, that is not going to be fun...  I really don't know how I will manage to afford all the gas for this and next month, we are on God's hands and he will help us as always, I'm sure that we will make it just fine... 


Hubby is working and that is good,  we are on a waiting list for OT and speech... I have to keep on pushing forward all the help she needs wont come by itself... next weekend we will start training for track, we have to rock the special Olympics team... woohoo... that's another day that I have to be with Ashley... 


My older son Alder is now complaining about it, he feels like I have just not enough time for him... I am trying as hard as I can... I just wish I could have some help sometimes so I could be with him more often... I know is not fun for him to be going around doctors offices... 


No wonder I don't want to have more kids... I just have no time for that... I don't see me with a baby now... maybe I will adopt someday!!! 

My work never ends

Been a mom means a constant work 24\7, we have to be everything and some more to our kids, even when we are sick we have to be there for them, its just part of been a mom, and every night I'm in charge of scaring the monsters that live in the closets, I'm their super hero and I should act like it...


But what does it mean to be a super mom?, it means making the impossible possible... Fixing their favorite outfit, toy or catching that bug that is scaring them... (everything but spiders) I dont do spiders... eekk ...


I'm not complaining in any way, it is constant work, and on top of all that you normally do as a mom, been a special needs mom has many ups and downs, all the medical issues that you have to deal with your child, people making rude comments, running up and down like a crazy person, getting that really?? look whenever someone asks you to do something or go somewhere on a day, and responding the hold on!! I have to check my agenda... lol...  I wish it was social events I had there, but its all Dr, appts... I have more specialist numbers on my phone than you can imagine... But yet you are expected to have tons of patience with people that have no clue about your life, and after a few weeks I had to get away from toxic people.


But today, I had a blast!!! I took the kids to a birthday party @ Chuck E Cheese, and since I cant relax there like other parents do... I had to be with my daughter playing, I got to behave like a child... hehehe there is nothing like taking the kids to a place where they can be kids... I just love it!!! the look on their face, the excitement of collecting the tickets and the reward of cashing them for stuff... every parent should do that at least once a month... 

I'm not a perfect mom...

All this things keep going on in our life, we can't fix them all... Between the kids, the house, the dog, the school and everything else, I cant find any time for myself... 


Been a special needs mom is not easy in any way, if you have a special needs child you know what I mean, but if you don't... well that is an unexplored ground for you... 


Many parents will try to tell me how to educate my kids, and yes, maybe, just maybe they are a bit annoying sometimes, but I have learn that you have to love them, and make them feel important, useful and capable every day, for me it doesn't matter if the house is a bit chaotic !!! as long as I see happy faces... 


I don't want a show house, I want a home... you will find clean laundry on the baskets, so what?? its clean!!! ask my kids if they are happy?? I will rather play with them than have a perfect looking house... 


I was not like this, let me tell you!!! I was always bitching about them not keeping the house clean, about me cleaning for hours, and them have them destroy it in a few minutes, all about don't do that!! stop!! etc... 


My husband doesn't agree with me so much about this, we wants a perfect looking house even if that means yelling to the kids and not letting them been kids and play... BUT, what is wrong with letting the kids make a little house in the living room with blankets and pillows?, what is wrong about letting them take a bubble bath and play with paint in the tub??...


You might not agree with me... and don't get me wrong, I do all the things that I must do as a mom... I do clean the house and fix their food, I do their laundry and help them with their homework, they do have chores and expect them to do them... I don't yell at them, spank or punish them like other parents do... I do timeouts like you and take away privileges when its needed, and they respect me, love me, and behave... 


Been a special needs mom change my life for the better...   I'm not perfect, and I don't want to be perfect, I overprotect my kids, or at least that's what people tells me all the time, but I don't think that not letting your kids play outside without adult supervision is bad... you never know who might try to get them if they are by themselves... and no they don't sleep over a friend house, or walk to the stop bus or home alone, they are not left in the house without an adult...


I will not eat if they want my food, I will not buy new clothes if the need them before me, I will keep my old shoes but they will have new ones... I am silly with them, playful and loving... nothing wrong with that... right?

Rushing through life...

When we are kids, we want to be old enough to be able to do things, we rush through  everything... Kids playing to be adults, but when we are adults... well, that is just another rush, getting to know people, trying to get along with family, etc... normal stuff right??


Well... not for me!!
I rushed to get a family, I was a mom at 18... it was cake really, I had a very easy going life, I had to take care of my son and be a home maker, then I was pregnant again, I had my daughter at 21, my pregnancy was hard, I felt alone since the beginning, my husband was not happy about me been pregnant again, but she was there, alive, I was never going to do anything to harm her, so time when by with lots of scary things like, low placenta, danger of a miscarriage, no weight gain, small child and so on... But I fought for that baby with all my might.


Finally came the day of having her... so I went to the hospital all happy, my labor was induced, so I was as happy as can be...  Got the medication, after been forgotten by the hospital personal, I called them to give me something for the pain, but just my luck, I was already 9cm... so it was time to push and have my baby, when she was born I was amazed by how small my beautiful baby was, it was not hard to fall in love with her...


Then came all the sleepless nights, non stop crying at night... and no clue of what was going on... and again life rushed by, I saw that my daughter was different I just couldn't explain how, she was late to sit, walk, smile, etc... Something was wrong!!! but what?? I had no idea, the doctors kept saying that she was small cause I was very petite, and that all the kids develop different...


Finally after looking to many things, last year I had a glimpse of what was really going on... On a routine eye exam the Ophthalmologist told me about Williams Syndrome, I had no idea what that was, I had never heard of it before, so when I got home I looked for it online, and oh boy!!! I saw a picture of a little girl, she was just like my daughter, and I couldn't hold my tears, I had to know if it was WS what she had, I calmed myself down and called the pediatrician, I asked them for a genetic test...


I was send then to Children's National Hospital, and that was the only time that i couldn't feel the rush, everything was so slow... the Appt was such a hard one, I was told the words that I didn't wanted to hear, my daughter looked like she had Williams Syndrome, but we had to  do the fish test to be sure... so we had to wait for the results, it was the longest month of my life...


Finally, the day came, I was so scared to go by myself, not only cause of what the doctor was going to tell me, but because I don't drive to DC ever, I asked my best friend to go with me, and she said yes, she also got her husband to go with us... That morning I woke up sick, I was trowing up and I was dizzy, on our way to the hospital I kept on telling myself to be strong, I was shaking when we got to the hospital, in the room the doctor gave me the worst case of WS, the fear that I had came truth my daughter had WS, I wanted to cry, scream, and slap the doctor that keep saying all this things like, she will never be able to deal with money, she will never be able to live a normal life, I was devastated, at the end, my friend hugged me, I had to stay strong and not cry to not upset my daughter, it was so hard, everything felt unreal, in the car I was crying without making any sound, my tears kept coming unstoppable...


When I got home I put on a DVD for her to watch, and I went to my bedroom to cry, my heart was in so much pain, but it was not physical, I never  felt that before, I kept asking God, why her?? I didn't ask why me? but why her?, why?... and again I felt so alone... telling my family the news was so hard, telling my mom was easy, she didn't make a fuss about it, but telling my brother, well that was hard, he loves my kids so much that it hit him like a ton of bricks ...


after all this... life before my daughter was cake... and life keeps rushing its way, and tomorrow ? Well, lets just say that we don't ask about tomorrow, we live the today!!!