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... 

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